Terminal Illness

Generally, a terminal illness is an illness or disease process that does not respond to curative treatment and will eventually result in death. In some cases, multiple health conditions may contribute to terminal diagnosis. For example, an individual may have a cancer diagnosis as well as severe kidney or heart disease. While one of these diagnoses might not be fatal in its own right, the two taken together might prove incurable.

With that being said, the exact definition of what constitutes a terminal illness is somewhat unclear. Even health care professionals use different criteria and different terminology. According to a systematic literature review published in the Journal of Pain and Symptom Management in 2013, some definitions include the following:

• An advanced stage of a disease with an unfavorable prognosis and no known cure.

• An irreversible condition that in the near future will result in death or a state of permanent unconsciousness from which you are unlikely to recover. In most states, a terminal illness is defined as one in which the patient will die “shortly” whether medical treatment is given or not.

• A condition caused by injury, disease or illness from which, to a reasonable degree of certainly, there can be no restoration of health, and which, absent artificial life-prolonging procedures, will inevitably lead to natural death. 

Many definitions also focus on life expectancy. For example, Medicare requires that patients have a life expectancy of six months or fewer to qualify for hospice care. But researchers also found articles that define a terminally ill person as having 24 months or fewer, 12 months or fewer, 9 months or fewer, 6 months or fewer, or “days or weeks” to live. 

This confusion is understandable. Predicting how an illness will progress in any given individual is difficult, especially in the context of ongoing improvements in treatment and medical care. Many diseases that were once viewed as uniformly and quickly fatal are now very treatable, and patients survive with them for quite a long time. In the early to mid-20th century, for example, the cure rate for all cancers was a dismal 33%. Thus, both doctors and laypeople looked at cancer as a terminal illness that quickly took most patients’ lives. But with the advent of chemotherapy and, more recently, immunotherapy, large numbers of patients are now able to live with a cancer diagnosis for many years. According to the American Cancer Society, almost 17 million Americans with a history of cancer were alive as of January 2019. Of those people, 67% were diagnosed more than 5 years ago, and 18% were diagnosed more than 20 years ago. Additionally, more than two-thirds of those cancer survivors were over 65 years of age. 

Another disease that was once looked upon as quickly and uniformly fatal was HIV/AIDS. During the late 1980s and early 1990s, the human immunodeficiency virus reached epidemic proportions in the U.S., and hundreds of thousands of people died. But with the introduction of antiretroviral therapy in 1996, the number of deaths from HIV plummeted, even as the number of infected individuals continued to increase. Today, HIV is both treatable and preventable, and with proper care, affected individuals can live long, relatively healthy lives. 

Similarly, Alzheimer’s disease is considered a terminal illness in that it inevitably results in death. But the disease trajectory is long and unpredictable. Many Alzheimer’s disease sufferers survive for 10 to 20 years. 

Thus, the term “terminal illness” is, in reality, somewhat fluid. Everyone dies eventually. And while some illnesses may hasten death, the characterization of some as inexorably fatal is often inaccurate. For this reason, healthcare professionals have adopted the term “life-limiting illness” to describe disease processes that are expected to result in death but with which people can often survive for many years. 

Examples of Common Terminal Illnesses

As of this writing, some of the most common life-limiting illnesses in the U.S. and globally are as follows:

• Cancer
• Heart disease
• Amyotrophic lateral sclerosis, or ALS (also called motor neuron disease or Lou Gehrig’s disease)
• Chronic obstructive pulmonary disease or COPD
• Dementia
• Chronic liver disease
• Chronic kidney disease

Each of these illnesses will follow a different pattern, or “trajectory.” In some cases, the person may do well for a long period of time and then suddenly enter a period of rapid decline (for instance, a person’s cancer may go into remission and then recur). In others, the person may improve and decline many times before they succumb to the disease, as is often the case in people who have heart disease or chronic obstructive pulmonary disease. In still other situations, as in persons with dementia, the patient declines slowly but steadily over a period of many years. 

The trajectory of an illness depends on a number of factors. First, of course, is the nature and severity of the illness itself. But the choices people make around treatment and goals of care will impact the disease trajectory as well. 

In any event, all life-limiting illnesses will eventually enter a terminal phase, in which death is likely to occur within months or weeks. 

How Do People React to a Terminal Diagnosis?

When you receive a diagnosis of a life-limiting illness, it’s normal to experience a myriad of emotions, including shock, disbelief, anger and fear. According to NHS Choices, uncertainty about the future is also very common. Questions will arise that have no ready answers, such as: 

• How will this affect my independence and my relationships?

• Will I still be able to work?
• How will my body change? Will I lose or gain weight, lose my hair or have noticeable scars?
• How much will treatment cost? 
• Will my insurance cover my care?
• How will I manage financially if I can’t work? 
• Am I going to die? 

As time goes on, you will begin to get answers to many of your questions, and some of them will be difficult to hear. For example, if you cannot work for some time, your family may experience financial hardship. This, in turn, can cause you to feel guilty or inadequate and lead to diminished feelings of self-worth. Work also gives many people a sense of purpose, and losing that purpose may leave you feeling rudderless and lost. Physical symptoms such as fatigue, nausea, loss of appetite and shortness of breath are also emotionally draining and often contribute to feelings of anger or despair. 

It’s also normal to feel sad when you learn you have a life-limiting illness. Facing such a serious diagnosis involves grieving — both for the things you’ve already lost and losses that are to come. 

Additionally, many people living with a serious illness feel some resentment toward those around them for their ability to continue with their lives. You may feel bitter and angry and ask yourself over and over, “Why me?” At the same time, if some aspect of your behavior (for example, smoking cigarettes) contributed to your illness, you also may feel guilt and regret. 

In short, serious illness can impact every aspect of your and your family’s lives. The challenges may seem insurmountable, but it’s possible to manage them if you can pinpoint the issues that are causing you the most distress. 

How Can I Cope with a Terminal Illness?

The vast majority of people living with a terminal illness describe it as a day-by-day struggle to remain hopeful and realistic at the same time. A terminal diagnosis does not necessarily mean you will die soon. Nevertheless, the knowledge that your illness will eventually take your life is a heavy weight to bear. It can be extremely difficult to remain interested and engaged with day-to-day activities, especially if you are not feeling well.

Although there is no clear roadmap for finding your way through a terminal illness, experts suggest that some of the following strategies may help:

Acknowledge That You Are Dying

When Elizabeth Kubler Ross first outlined the “five stages of grief,” she based them on interviews with patients who were living with a terminal illness and grappling with the reality of their own death. While those stages: denial, anger, bargaining, depression, and acceptance, are not part of every dying person’s experience, denial is a very common, and in many cases a very necessary emotional response to the shock of learning that your illness is incurable. Overcoming denial takes time and patience, but letting it go and accepting that death is inevitable will often open up space for activities and relationships that add meaning to the end of your life. 

Arm Yourself with Knowledge

While some individuals who have received a terminal diagnosis prefer to stay “in the dark” about what to expect, many patients and caregivers feel that learning as much as possible about their illness can empower them to prepare emotionally, physically and financially for what is to come. The best source of this information is usually the person’s treating physician and other providers who are familiar with their diagnosis, prognosis, preferences and goals of care. However, patients and care partners should be prepared to ask questions and request clarification if they feel the information being provided is confusing or unclear. 

With that being said, many individuals will turn to the internet to learn more about their or a loved one’s disease. If you choose to do so, we encourage you to look for reliable websites such as those from respected healthcare providers such as Mayo Clinic or Johns Hopkins Medicine, or those sponsored by federal agencies such as the National Institutes of Health. MedLinePlus.gov, a website from the National Library of Medicine that has verified health information on over 1,000 health related topics,  is a good place to start. The site also provides a helpful online tutorial on how to evaluate internet health information that can guide you as you do your research. 

Reach Out to a Palliative Care Specialist

According to Dr. Dawn Gross, a palliative care physician at UCSF Health, “palliative care is a specialty that focuses on supporting people living with life-altering illness (need not be terminal) and their care partners to navigate complex symptoms and decision-making. It can be provided simultaneously with care intended to alter the natural progression of a disease or collection of diseases.” Importantly, palliative care should not be confused with hospice care, which is a version of palliative care designed for people living with a terminal illness with an expected prognosis of 6 months or less should the illness run its natural course. 

While palliative care is not widely available in all parts of the United States, many larger urban and suburban medical centers have a palliative care department that is available to consult with patients who need help managing the many issues related to a terminal diagnosis. Palliative care physicians are skilled at symptom management of all kinds and typically work with a team of nurses, therapists, social workers and clergy who offer additional resources and support. If you think you may benefit from this kind of care, ask your primary care physician to refer you to a palliative care team in your area. 

Ask for Help

Many of us are reluctant to ask for help when we need it. But when you are coping with a terminal illness, it is virtually impossible to manage everything by yourself. Whether you need help preparing meals, completing household chores, providing childcare or grocery shopping, most people are more than willing to step in and lend a hand.You also may want to ask someone you trust to go with you to medical appointments to take notes and help you make decisions about your care. 

Join a Support Group

Support groups are not for everyone. But it can be helpful to attend and interact with people whose experience is similar to your own. Many people who live with a life-limiting illness feel that no one else can appreciate what it is like to be in their shoes. Meeting others who are facing the same challenges can be both freeing and empowering and decrease feelings of isolation and loneliness. If there is no support group in your area or you are unable to attend in person, you can search for virtual support groups and participate from your home or any other location you choose. 

Prepare Your Advance Healthcare Directive

If you have not already done so, you may want to consider creating an advance healthcare directive before you become more seriously ill. An advance directive serves two functions:

• It designates the person or persons you want to make medical decisions for you if you are unable to speak for yourself (often called a healthcare agent, surrogate or proxy).
• It outlines the kind of care you do and do not want to receive if you are unable to  communicate with the care team. (This portion of the directive is sometimes called a Living Will.)

While an advance healthcare directive cannot anticipate every possible scenario, it can be helpful in guiding your healthcare providers and next of kin in making decisions about your care. With that being said, communicating your preferences to your health care agent and, when appropriate, your loved ones, is arguably the most effective means of ensuring that you receive the kind of care you want if you cannot speak for yourself. 

Get Professional Help for Depression

Feeling down, sad, or hopeless can be a normal reaction to learning that you are dying. However, in most people living with a terminal illness, these feelings are manageable and do not overwhelm their ability to find some joy, meaning and pleasure in life. Clinical depression, on the other hand, can disrupt your ability to connect with loved ones in a meaningful way or enjoy things you once found pleasurable. Depression can also interfere with sleep, appetite and energy levels, and may even make physical symptoms such as pain and nausea more difficult to control. 

If you are living with a terminal illness and experiencing depressive symptoms, you may want to ask your primary care physician to refer you to a mental health professional with experience in working with people who are at the end of life. Various treatments, such as psychotherapy, medication, or complementary therapies such as yoga, massage, meditation or art therapy are available that may help ease the symptoms of depression and allow you to enjoy a better quality of life. 

Plan Your Funeral 

Part of preparing for your death includes planning for what will happen after you die. Although the prospect of doing so may be somewhat daunting, it can be empowering to know that your loved ones will know exactly what you do and do not want to happen after your death. Further, planning your funeral along with your loved ones can be a very meaningful activity that gives all involved a chance to express how they would like to remember you. 

Some questions to consider as you think about this final chapter include:

• Do you want burial or cremation or some alternative form of final disposition?
• Do you want to hold a home funeral or a funeral in a funeral home?
• How and where to dispose of your remains (cemetery, scattering your ashes etc.)?
• What type of memorial celebration would you like?
• Do you wish to donate tissues or organs?

This is also a good opportunity to make sure your loved ones are aware of any arrangements you have already made, such as a pre-need funeral contract, a payable-upon-death account, or registration with a whole body donation program. 

Need help planning? Check out the SevenPonds Comprehensive Step-by-Step Planning Guide: Choosing Funeral Arrangements and Final Disposition

Conclusion

In conclusion, living with a terminal illness can be a difficult journey, filled with ups and downs, emotional turmoil, and physical challenges. However, it can also be a time of profound growth, and meaningful moments. Seeking out the support of others, trying to accept your feelings as they arise and engaging in activities that are meaningful for you can bring a sense of fulfillment and purpose to this final chapter of life.

Sources:

“Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: a systematic review.” Journal of Pain and Symptom Management. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3870193/ 

Cancer Research: “A History of Cancer Chemotherapy”. http://cancerres.aacrjournals.org/content/68/21/8643 

HIV.Gov: “HIV Treatment Overview”. https://www.hiv.gov/hiv-basics/staying-in-hiv-care/hiv-treatment/hiv-treatment-overview

“Stages of Alzheimer’s”. Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/stages 

“What Are the Leading Causes of Death in the US?” Medical News Today. https://www.medicalnewstoday.com/articles/282929 

“ Coping with a Terminal Illness”. Chossing Therapy. https://www.choosingtherapy.com/coping-with-terminal-illness/ 

“Depression in the Face of a Terminal Illness and Death”. Healthline. https://www.healthline.com/health/depression/terminal-illness#coping-and-support

“Evaluating Internet Health Information: A Tutorial from the National Library of Medicine”. Medline Plus. https://medlineplus.gov/webeval/webeval.html

Mosby’s Medical Dictionary. https://shop.elsevier.com/books/mosbys-medical-dictionary/mosby/978-0-323-08541-0

Cancer survival rates have improved over the last 20 years, likely due to new treatments and advances in medical technology for detection. It was estimated that there were 18.1 million cancer survivors in the United States as of January 2022, and projections suggest that there will be 26 million cancer survivors by 2040. Increased efficacy in cancer screening methods, a greater focus on survivorship care, and more consistent promotion of public health campaigns regarding the signs and symptoms of cancer are all factors that further support an increase in survival rates. 

As cancer survival rates have increased within the past two decades, cancer mortality rates have also decreased. Findings from the 2022 Annual Report to the Nation on the Status of Cancer indicate a significant decrease in overall cancer mortality rates from 2015 to 2019. This decrease includes: 

• 2.3% per year among men 
• 1.9% per year among women 
• 1.5% per year among children ages 0-14 

According to the American Cancer Society, the risk of dying from cancer has decreased within the past 28 years. In review of the period from 1991 to 2019, the overall cancer mortality rate decreased by 32%. This decline seems to be influenced by an increase in the number of people with lung cancer who are living longer after being diagnosed during the early stages of the illness. Ultimately, the increase in the percentage of cancer survivors and the length of survival following diagnosis reflects an improvement in how cancer is diagnosed, treated, and understood. A greater shift has also occurred in providing more comprehensive support to individuals throughout their journey from diagnosis to survivorship.

Sources

“Annual report to the nation on the status of cancer.” National Cancer Institute: Surveillance, Epidemiology, and End Results Program. https://seer.cancer.gov/report_to_nation/ 

“Cancer statistics.” National Cancer Institute. https://www.cancer.gov/about-cancer/understanding/statistics 

“Risk of dying from cancer continues to drop at an accelerated pace.” American Cancer Society. https://www.cancer.org/research/acs-research-news/facts-and-figures-2022.html 

“Statistics and graphs.” National Cancer Institute: Division of Cancer Control & Population Sciences. https://cancercontrol.cancer.gov/ocs/statistics#

Preparatory grief is the sense of loss that a person diagnosed with a terminal illness might feel in relation to their own inevitable death. This concept was first introduced by Elisabeth Kubler-Ross in the 1960s in her book “On Death and Dying.” Kubler-Ross defined preparatory grief as “grief the terminally ill patient has to undergo in order to prepare himself for his final separation from this world.” 

While anticipatory grief experienced by family or loved ones shares similar symptoms, preparatory grief is the preferred term to describe grief as experienced by the dying patient. Although these terms are sometimes used interchangeably, both differ from grief, mourning and bereavement that occur following the loss of a loved one.

Signs of preparatory grief may include feelings of anger, anxiety, fear, guilt, or sadness. Fatigue, emotional numbness, or forgetfulness may also be present. Although these symptoms appear similar to depression, they are not the same thing.

Causes of preparatory grief

Researchers identified preparatory grief as “the physical, psychological and cognitive changes that occur in response to an abrupt change in the relationship between the grieving person and the loss of object(s).” They define these “objects”  as tangible representations associated with current losses and projected loss in the future. As a terminally ill person attempts to reorganize, resolve, or adjust their expectations in relation to these losses, they may experience feelings of preparatory grief.

Aside from the anticipated separation from loved ones, some things that may cause symptoms of preparatory grief include the loss, or future loss of:

• Simple pleasures that can no longer be enjoyed
•  Life experiences or events like graduations, anniversaries, birth of a grandchild, etc.
• Former self-image (person struggles to adopt a more fragile view of themself)

However, it is important to remember that someone’s reason, experience, or response to preparatory grief can widely vary and change. A person recently diagnosed with a terminal illness may be in a state of shock where disbelief can make it difficult to process grief. Or, the chaos of re-adapting how they live day to day might easily overshadow their ability to confront emotions associated with grief.

Offering support for someone experiencing preparatory grief

Below are a few suggestions for supporting someone experiencing preparatory grief. They are based upon an acronym: RELIEVER.

• Reflect – This simply means mirroring the person’s emotions. If they express anger about their illness, simply acknowledging you hear their anger can help someone to feel they are not alone.  
• Empathize – Acknowledge what the person may be feeling. Offering feedback such as “I’m so sorry you are going through this” helps a suffering person feel validated and heard. 
• Lead – Use guided questions that can help someone recall and utilize familiar coping mechanisms. For example, asking “When you went through (a particular) difficult situation in the past, how did you handle it or get through it?”
• Improvise – Be alert to personal boundaries and be ready to change direction if it appears your efforts to help are causing the person more distress.
• Educate – You can help someone identify and validate their feelings by explaining that they are not alone and that others experience the same feelings in similar circumstances.
• Validate – Let the person know that their feelings are perfectly normal and expected for someone struggling with very difficult circumstances. 
• Recall – Prompting memories of special stories or life achievements can be comforting to someone facing the end of their life.

For the person who is dying, recalling these memories may offer a chance to do a final “life review” and find a sense of closure before death occurs. Some people find that having the opportunity to say “I love you;” “I forgive you;” and “Please forgive me,” provides a sense of peace and comfort as life comes to an end. Granting them an opportunity to express thoughts and feelings about their relationship with you could be beneficial to both the gying person and people close to them. 

Sources

“Identifying and Managing Preparatory Grief and Depression at the End of Life”. American Family Physician. https://www.aafp.org/pubs/afp/issues/2002/0301/p883.html

Heart disease continues to be the leading cause of death in the world due to the prevalence of unhealthy lifestyle behaviors such as smoking, excessive alcohol use, physical inactivity, and unhealthy diet. It is a chronic disease in a group of disorders known as cardiovascular disease (CVD), which is estimated to cause 17.9 million deaths each year. Conditions such as high cholesterol, obesity, high blood pressure, and diabetes are all risk factors that increase the likelihood of developing heart disease.

Although unhealthy lifestyle behaviors and chronic diseases are the primary reasons that heart disease maintains the top position as the leading cause of death, there are likely other factors that influence its prevalence around the world. For example, individuals in low- and middle-income countries often have limited access to care, and this prevents them from receiving appropriate health screenings, treatments, interventions, and medications. Similarly, individuals who are outside of low-and middle-income countries are affected by limitations that are imposed by social determinants of health, such as low socioeconomic status, being uninsured, lack of community resources, stigma and other factors.

Ultimately, the drivers for heart disease as the leading cause of death worldwide are behavioral and socioeconomic. Greater efforts to spread awareness and public health initiatives emphasizing the need for healthy lifestyles, the reduction of social inequities, and an overall increase in access to quality care are necessary to combat the death rate attributed to heart disease. By addressing the causes of heart disease directly using a variety of approaches, we may be more likely to reduce its prevalence worldwide. 

Sources

“Cardiovascular Diseases.” World Health Organization. https://www.who.int/health-topics/cardiovascular-diseases#tab=tab_1 

“Heart Disease Deaths.” Centers for Disease Control and Prevention: National Center for Health Statistics. https://www.cdc.gov/nchs/hus/topics/heart-disease-deaths.htm 

Psychedelics administered in controlled and therapeutic settings have, in many cases, alleviated anxiety surrounding death, increased feelings of connectedness, increased ratings of death acceptance, and induced mystical or spiritually significant experiences for individuals at the end of life. While substances such as psilocybin, which is the active ingredient in “magic mushrooms” and other psychedelic drugs, are currently being studied in clinical trials for the treatment of psychiatric disorders and chronic diseases, their potential use in end-of-life settings is not yet fully realized. 

Researchers believe that taking psychedelics provides terminally ill patients with a sense of peace and acceptance regarding the inevitability of their death. This may occur through confronting their fears, new insights into their understanding of their mortality, or an existential or spiritual experience that may help them find meaning or purpose through a new perspective. MDMA-assisted therapy has similar benefits in reducing anxiety and fear, promoting emotional resilience, gaining a sense of reconnection to life, and improving quality of life.

Although there are many promising findings surrounding the use of psychedelics among terminally ill patients, the emergence of psychedelic medicine is in its early stages, with active development resulting from ongoing research and clinical trials. Research is necessary to fully understand the potential efficacy, long-term effects, and safety of the use of psychedelic substances in individuals with life-threatening or end-stage diseases. Additionally, many regulatory and legal barriers limit the more widespread compassionate use of psychedelic-assisted therapy across patient populations. Despite these challenges, the potential benefits of using psychedelics to relieve death anxiety are slowly gaining increased interest and support among patients, researchers, and healthcare professionals. 

Sources

“Psychedelics May Lessen Fear of Death and Dying, Similar to Feelings Reported by Those Who’ve Had Near-Death Experiences”. Johns Hopkins Medicine. https://www.hopkinsmedicine.org/news/newsroom/news-releases/2022/08/psychedelics-may-lessen-fear-of-death-and-dying-similar-to-feelings-reported-by-those-whove-had-near-death-experiences 

“Facing death, returning to life: A qualitative analysis of MDMA-assisted therapy for anxiety associated with life-threatening illness”. National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9552520/

“Dying Patients Are Fighting for Access to Psychedelics”. Time. https://time.com/6208079/psychedelics-psilocybin-access-end-of-life/

Numerous studies have found that cannabis, or marijuana, can be effective in managing symptoms of loss of appetite, nausea, and pain in patients with terminal illnesses such as cancer. These benefits are largely achieved through the active compounds in cannabis, such as tetrahydrocannabinol (THC) and cannabidiol (CBD), which can provide a variety of therapeutic effects in the body. A wide range of available strains and types of cannabis results in different amounts and active compounds present in the plant itself, which can influence the effects experienced after intake. 

Opioids and other strong medications are often prescribed for pain management in patients with cancer, but sometimes result in problematic side effects such as constipation and, rarely, respiratory depression. While these side effects can be effectively managed by a knowledgeable care team, promising findings from a recent study showed that augmenting these medications with cannabis enhanced pain management while also reducing the amount of opioids needed. Constipation was also relieved due to the lower dose of opiates. Some studies have also suggested that THC and CBD can slow the growth of or destroy certain types of cancer cells in the laboratory, although these options are not approved for the management of cancer. 

Cannabis has also been used to ease existential and spiritual suffering at the end of life. Terminal illness can cause intense feelings of sorrow, hopelessness or anxiety. In some individuals, cannabis use can produce a sense of calm or euphoria which temporarily eases this emotional suffering. However, both the dosage and chemical makeup of cannabis compounds is an important consideration in this regard. Higher concentrations of THC, in particular, can actually increase anxiety in sensitive individuals, so care should be taken to ensure that the person receives an appropriate dose. 

Although ongoing research includes many promising findings regarding the use of cannabis in patients with terminal illnesses, there are still concerns about its use. For example, FDA-approved cannabinoid drugs such as Dronabinol and Nabilone provide many of the benefits discussed here, but may cause side effects such as increased heart rate, dizziness, fainting, or the worsening of anxiety or depression in some individuals. Additionally, while 38 states and the District of Columbia have legalized the use of medically approved cannabis, the federal government still designates cannabis as a Schedule I drug with “no medically acceptable use and a high potential for abuse” thus limiting the ability of federally funded research into its benefits and risks. 

Sources

“Marijuana and Cancer”. American Cancer Society. https://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq

“Medicinal Cannabis Can Safely Relieve Cancer Pain and Curb Total Meds Use”. BMJ. https://www.bmj.com/company/newsroom/medicinal-cannabis-can-safely-relieve-cancer-pain-and-curb-total-meds-and-opioid-use/

“Anxiety and Cannabis, A Review of Recent Research: April 2023”. Drexel University Medical Cannabis Research Center. https://drexel.edu/cannabis-research/research/research-highlights/2023/April/anxiety_cannabis_fact_sheet/ 

Pathways: “Is Medical Marijuana Beneficial For End of Life Care?” Pathways Health.https://pathwayshealth.org/is-medical-marijuana-beneficial-for-end-of-life-care/ 

“State Medical Cannabis Laws”. National Conference of State Legislatures.  https://www.ncsl.org/health/state-medical-cannabis-laws

In the United States, hospice care is available to any individual who, in the opinion of two physicians, has a life expectancy of six months or less. Although many individuals choose hospice care after pursuing curative treatments for some period of time, prior attempts to cure an underlying illness or illnesses is not a prerequisite. Persons wishing to enter hospice must choose to forgo potentially curative treatments such as cancer chemotherapy or kidney dialysis. However, they will still receive medically necessary treatment that is aimed at symptom control and improved quality of life. 

With that being said, every person is different, and there is no pat answer as to when it is appropriate to change the goals of care. Much depends on each individual’s circumstances and what they hope to accomplish in the time they have left. One person, for example, may want to do everything possible to stay alive until their grandchild is born or their son graduates from medical school. To them, the side effects of another round of chemotherapy or additional treatments to try to buy a little bit more time may make perfect sense. Another person in a similar situation may have accepted the fact that their disease has run its course and want nothing more than to be as comfortable as possible until their life comes to a natural end. 

If you and your care partners are considering hospice, you may first wish to discuss your thoughts with a palliative care specialist who can help you define your goals and determine whether hospice care is right for you at this time. A palliative care doctor may also help you obtain a hospice referral or guide you in advocating for a referral from your treating physician if that is what you decide is best.  

According to the Center to Advance Palliative Care, palliative care is specialized medical care that aims to relieve symptoms and emotional distress in patients and families living with a serious illness. The care is typically delivered by a palliative care team that includes a physician, a nurse (or several nurses), a social worker, a chaplain and other professionals, such as physical and occupational therapists, as needed. Some teams also include a registered dietician, a psychologist or psychiatrist, and a team of integrative therapists, such as massage therapists, aromatherapists and acupuncturists. Translator services are typically available for non-English speaking patients as well. 

Unlike hospice care, which is generally reserved for patients who have fewer than 6 months to live, palliative care is appropriate for anyone living with a serious illness regardless of their prognosis. It can be started at the time of diagnosis and continued alongside curative care. 

Palliative care revolves around the patient and their family — the focus is on identifying and alleviating sources of discomfort and stress throughout the course of the disease. This requires ongoing assessment and regular follow-ups because these sources are not stagnant. What the patient and their loved ones need at the time of the diagnosis may be very different from their needs as the patient approaches the end of life. Although the scope of care they provide is very broad, issues the team can help address include the following:

• Physical issues, such as fatigue, pain, shortness of breath, nausea and vomiting, loss of appetite and difficulty sleeping. Doctors can prescribe medications to address many of these symptoms, while other healthcare professionals can add more layers of support, such as massage, nutrition counseling, positioning and breathing techniques. 

• Emotional issues, such as fear, anxiety, depression and despair. Some of these issues can be addressed with medication, and mental health professionals can provide counseling, referrals to support groups and other kinds of support as well.

• Practical concerns, such as financial worries, insurance issues, child care, housing or transportation needs. As a rule, the palliative care social worker will help the family navigate these systems, find appropriate resources and request aid. 

• Spiritual needs, which become more important to many people who are facing a serious illness. Chaplaincy services offer spiritual counseling or simply provide a safe place for the patient and their family to discuss their values and goals. 

If you believe palliative care can help you or your family cope with your illness, speak with your doctor about a referral to a palliative care team. Most medical centers in the U.S. offer a palliative care service, although many only provide care to patients who are hospitalized. With that being said, more and more centers are developing outpatient palliative care teams for  patients with serious illnesses such as cancer, heart disease or COPD. Ask your primary care doctor what’s available in your area, or, if you’re hospitalized, ask to meet with the nurse case manager to explore what options are available to you. 

Sources
“What is Palliative Care?” The Center to Advance Palliative Care.  https://getpalliativecare.org/whatis/

The federal Right-To-Try Act gives terminally ill patients access to experimental medications that are not yet FDA-approved. This law means those diagnosed with a terminal illness have a right to acquire unapproved medications or biologics that may alleviate their specific condition or prolong life. The bill was signed into law by President Donald  Trump on May 30, 2018, granting patients access to investigational drugs when all other treatments or clinical trials have been exhausted. While 38 states had previously passed similar laws, this Right-To-Try law is nationwide.

The law requires that patients meet certain qualifications to be eligible for participation: 

• The patient must be diagnosed with a terminal disease or condition 
• The patient must have exhausted all approved treatment options.
• The patient must be deemed ineligible to participate in clinical trials that might otherwise lessen or cure their disease.
• The experimental drug must have already passed FDA phase 1 clinical testing
• The pharmaceutical manufacturer must approve the use of the drug as an experimental treatment
• A treating physician or health care provider must recommend and approve the use of the drug for the patient.
• The patient must provide written informed consent regarding risks associated with the treatment

It is important to note that Right-To-Try medications do not include those that may be prescribed for off-label use by a physician, as these drugs are already approved by the FDA for other conditions.

Key considerations before you pursue right-to-try medications

Under the Right to Try Act, pharmaceutical companies and physicians are immune from liability. Therefore, patients should have a full understanding of the pros and cons associated with any experimental treatment. The information provided by pharmaceutical companies can often be technical, or contain language that is difficult for the average person to grasp. Patients should always seek advice from their healthcare provider about the risks, benefits and alternatives to any treatment they seek. 

Additionally, while the outcome of experimental therapies may be beneficial or even lifesaving for some terminally ill patients, misconceptions about their projected success rate can foster a false sense of hope. Further, since these therapies have only been tested in small clinical trials, the scope of potential side effects and toxicities is largely unknown. These effects can be significant and potentially worsen a patient’s condition or cause serious detriment to their quality of life. 

Paying for right-to-try medications

According to the FDA, drug companies do have a right to charge for investigational products. Before accessing a right-to-try treatment, patients should check with their health insurance provider to verify what will be covered and what will not. Most often, insurers, including Medicare and Medicaid, do not cover the cost of these medications.

Sources

“S.204 – Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017”. Congress.gov. https://www.congress.gov/bill/115th-congress/senate-bill/204/text

“Development & Approval Process | Drugs”. U.S. Food & Drug Administration. https://www.fda.gov/drugs/development-approval-process-drugs

“What Are “Biologics” Questions and Answers”. U.S. Food & Drug Administration. https://www.fda.gov/about-fda/center-biologics-evaluation-and-research-cber/what-are-biologics-questions-and-answers

“Assessment of the Right-to-Try Law: The Pros and the Cons”. The Journal of Nuclear Medicine. https://jnm.snmjournals.org/content/59/10/1492

The FDA Expanded Access Program, also known as Compassionate Use, is an option that allows patients with terminal illnesses to try investigational medical products as treatments outside of clinical trials if there aren’t any comparable therapies that can be used instead. Investigational medical products are defined as drugs, biologics, or medical devices that are currently being tested to determine whether they are safe and appropriate for use in patient populations. Since these products are being tested, they have not yet been approved by the FDA. As a result, there aren’t any guarantees that the product will be effective in the treatment of the condition, and there is a possibility that using the product may cause adverse reactions. 

Being eligible for expanded access does not always guarantee that a patient will receive an investigational medical product. For example, sometimes there are limited amounts of medications available for compassionate use, such as if a pharmaceutical company only has enough medication for a clinical trial. Additionally, although expanded access is legal, it is limited to specific patients based on criteria. All of the following criteria must be met for expanded access to be deemed an appropriate option: 

• The patient must have a life-threatening or serious disease or condition
• The potential benefit to the patient is significant in comparison to the potential risk 
• It is not possible for the patient to enroll in a clinical trial 
• There isn’t a satisfactory or comparable alternative therapy for the disease or condition 
• Providing the investigational medical product will not interfere with any investigational trials to support product development or marketing approval for treatment indications 

It is important to note that the FDA Expanded Access Program is not the same as the Right to Try Act, which was passed in 2018. Although the Right to Try Act is another option that patients may use to have access to medications that have not yet been approved by the FDA, the eligibility criteria differ from expanded access, and medications that may be provided through Right to Try have already been used in Phase I clinical trials. 

Sources

“Compassionate Drug Use.” American Cancer Society. https://www.cancer.org/cancer/managing-cancer/making-treatment-decisions/clinical-trials/compassionate-drug-use.html 

“Expanded Access.” U.S. Food and Drug Administration. https://www.fda.gov/news-events/public-health-focus/expanded-access#:~:text=Sometimes%20called%20%E2%80%9Ccompassionate%20use%E2%80%9D%2C,trials%20when%20no%20comparable%20or 

“Expanded Access: Information for Patients.” U.S. Food and Drug Administration. https://www.fda.gov/news-events/expanded-access/expanded-access-information-patients

First, knowing why you want to participate in a clinical trial with a terminal illness and what you hope to gain from the experience can help you to decide which trial may be best for you. Are you hoping to cure your disease or slow it down? Do you want to reduce pain or other symptoms? Or, perhaps you want to participate so researchers might develop better outcomes for others with your disease in the future.

Although participation in a trial may be more difficult or challenging for terminally ill patients, exercising autonomy in decision-making when it comes to research participation can be beneficial. According to a literature review published in Sage Palliative Medicine, there are many reasons why patients with a terminal illness choose to participate in trials. These include:

• It appeals to them on some personal level
• It provides a sense of contributing to scientific research; a desire to help others
• The trial may provide tangible or potential benefits; for example, studies on aromatherapy, special mattresses, or relaxation techniques could provide more enjoyable and immediate results
• It could help ease or better manage symptoms
• Participation is easy with little risk involved
• Study is non-invasive 
• The trial provides social interaction during participation

Whatever the reason, the main objective of any trial should be to meet your own personal goals.

Before beginning your search for clinical trials

There are many factors to consider before deciding which trial may be the best fit for you. Below are a few things you should keep in mind as you begin your search.

• Eligibility – Researchers will need to determine if you meet criteria set for any trial. Gathering medical details about your diagnosis, prognosis and health records may be helpful. Sometimes previous curative treatments, side effects or current symptoms can disqualify you from participating, so it is good to have that information on hand.

• Location – You should consider how you will manage any travel that may be required for you to participate. Some trials may involve scheduled hospital visits, periodic diagnostic testing, lab work, injections or other treatments at one or multiple locations. How far or how often are you willing to travel and how will you get there and back?

• Duration – Think about the level of commitment you are willing to make and set expectations on how long you would be willing to participate. Is a one-time trial ideal, or will a weeks-long or months-long trial be something you might also consider? How long are you willing to participate on an ongoing basis?

After setting goals and assessing your ability to participate, you can contact a team running a trial that seems like a good match, or ask your doctor to do so for you. Be aware that some important details may not be readily available within the initial summary, so it is important to ask questions soon after you make contact with them.

Aside from eligibility, location and duration, here are a few additional questions you may want to ask before making a final decision to apply for the trial.

• What is the purpose of the trial?
• What are the possible risks, side effects, and potential benefits?
• What happens if I cannot or do not want to complete the trial?
• How will I, or my family, be informed about the trial results?

The medical team or board will then review your application to decide if you are an appropriate match.

How to find a clinical trial

The most comprehensive database of privately and publicly funded clinical studies around the world can be found at www.clinicaltrials.gov. You can search using a condition or disease, keywords, specific terms and/or location.

Clinical trial listing services like Third Opinion connect patients directly to clinical recruiters at no cost to you. Although most of their available trials may also be listed at clinicaltrials.gov, at these websites patients can create an account and provide details that generate a search of their database for potential matches.  

You can also search national organizations related to your illness or diagnosis that may offer additional avenues to find a relevant trial. The websites of pharmaceutical and biotechnology companies may also show trials that might interest you.  

Your health care provider may also recommend a clinical trial that will meet your needs. 

Sources
“Dying persons’ perspectives on, or experiences of, participating in research: An integrative review.” Sage Palliative Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6144348/

Although it’s not always necessary to get a second opinion, most experts agree that it is often a good idea. Even doctors who have a great deal of experience can be wrong about a diagnosis. According to one study from 2017, about one in five patients who went to Mayo Clinic for a second opinion left with a completely different diagnosis, and over 60% had their diagnosis corrected in some way.

Another small study that looked at 70 cancer patients who sought a second opinion from a National Cancer Institute-designated cancer center found that 43% of their diagnoses changed. This doesn’t mean the original doctor was incompetent, experts say. It simply points to the reality that diagnosing a serious illness can be complicated, and seeking a second opinion can make a big difference in getting the right care. Certainly, if the first doctor says the illness is terminal, it’s worth making sure they are right. 

Misdiagnosis of a serious illness can also lead to significant harm. According to a 2019 analysis of 11,000 malpractice claims reported in the journal Diagnosis, between 40,000 and 80,000 patients in the U.S. die every year because their medical diagnosis was incorrect. An additional 80,000 to 160,000 persons may suffer severe injury to their health as a result of an incorrect diagnosis, the study found. 

Finding the Best Treatment Options

A second opinion can also be helpful in identifying the best treatment strategy. Even the most competent doctors are not always informed about the latest research, especially if their experience with a particular diagnosis is limited. Further, not every healthcare provider is equipped to offer every option. “Some treatments — particularly clinical trials — may not be offered at every center,” said Dr. Anees Chagpar, MD, MBA, MPH, a breast surgeon at Yale Medicine. “So, while patients may find that two centers offer the same diagnosis and treatment, this is not always the case.”

A second opinion is particularly crucial when you feel unsure about any aspect of the diagnosis you’ve been given or the proposed treatment plan. Specifically, you should ask for a second opinion when you’ve been told you have a life-limiting illness and in the following circumstances:

• You or your doctor are unsure about the diagnosis
• You’ve been diagnosed with a rare condition
• You have several medical problems
• The proposed treatment is experimental, risky or controversial
• You’re concerned about treatment side effects
• You’re not responding to treatment as expected
• You have a choice between treatment options that vary greatly in cost
• You want to explore other treatment options
• Your health insurer requires one

Remember, this is your body and your life, so don’t be shy about asking your doctor for a referral to another specialist who’s familiar with your disease. Any competent doctor will respect your desire to make informed decisions about your care. 

Sources

“Misdiagnosis of the ‘big three’ results in ‘serious harm” . Medical News Today. https://www.medicalnewstoday.com/articles/325811#The-big-three

“Can a Second Opinion Make a Difference?” Yale Medicine. https://www.yalemedicine.org/news/second-opinions 

There is no one right way to deal with anticipatory grief or prepare for the death of someone you love. Just as all relationships are different, so are the losses you will experience as that relationship comes to an end. If the person has endured a long illness, you may have already been mourning a number of losses for quite some time: the loss of companionship, the loss of intimacy, the loss of shared hopes and dreams, even the loss of your own sense that life was stable and secure. But as their death becomes imminent, the overarching question of how you will manage the pain of permanent separation may be foremost on your mind. 

One thing to bear in mind as you navigate this challenging territory is that there is no way to avoid the pain that the loss of your loved one will cause. It is natural to look for a path forward that allows you to accept their death with equanimity and calm. But grief is the other side of love. If you love someone, you will hurt when they are no longer in your life. You will feel their absence deeply, particularly if you were very close. And while this is a frightening reality to contemplate, accepting it can be the first step to preparing for your loved ones death. 

Another important aspect of dealing with anticipatory grief is saying what needs to be said. Many people who lose a loved one suddenly suffer terribly because they never got to say “I love you” one last time, or never got to apologize for something they had done. But when you know your loved one is dying, you have the time to share your feelings and have meaningful conversations while they are still alive. Admittedly, this can be very difficult. It requires acknowledging that time is short and there may not be an opportunity to speak with your loved one again. But it also can be very freeing, both for you and for the person you love. 

In his book “The Four Things That Matter Most” Ira Byock provides a blueprint for these kinds of conversations that can be enormously useful as you think about what you want to say. He suggests that these four phrases “I forgive you,” “Please forgive me,” “Thank you” and “I love you” form the framework for all of the deeply felt emotions we want to convey as we say good-bye. You may want to write them down, then fill in your thoughts about each one. 

• What forgiveness do you owe your loved one that you have withheld out of resentment or hurt? 
• What have you not told them you are sorry for because you felt guilty or ashamed?
• What have they given you that you will always be thankful for? 

These are profound questions that get to the very heart of your relationship. Exploring them together can bring both you and the dying person a sense of completion and peace. 

And, of course, “I love you and I will miss you so much” can never be said too often as you prepare for your loved one to die. 

Sources
Ira Block: “The Four Things That Matter Most”. https://www.amazon.com/Four-Things-That-Matter-Most/dp/1476748535

When a parent is diagnosed with a terminal illness, it is best to talk with your children soon afterward. Doing so may help children cope more effectively with the end-of-life process, particularly if their parent has been ill for a long time. 

Medical experts recommend open and honest dialogue about what will happen, so parents can readily address their child’s fears. Although the discussion should be age-appropriate, language ought to remain clear and concise. Creating a safe space in familiar surroundings may also help a child better cope with learning about their parent’s illness.

Here are a few recommendations for initiating the conversation:

• Be specific about your or your loved one’s illness and what the decline may look like. Depending on the child’s age, you may reference a specific diagnosis or you may simply say something like “Dad is very sick.”
  
  
• Ask questions to determine how much the child already knows or suspects. Something open-ended like “Have you noticed that Daddy has been sleeping a lot lately?” gives the child a chance to talk about what they’ve noticed and their fears about what it may mean.
  
  
• Reassure the child that they will not get sick too and that you or the other parent will be there for them.
  
  
• Explain to the child that the illness is not their fault, as children sometimes tend to blame themselves for catastrophic events.
  
  
• Try to remain composed, but don’t hide your feelings or pretend everything is fine.

Maintaining the child’s normal routine and preserving family time as much as possible may also help them cope more effectively.

Talking to children about death

According to a paper published in the journal CA: A Cancer Journal for Clinicians, how well a child manages bereavement may depend upon how skillfully the surviving parent guides them through their loved one’s terminal illness, including expectations around the death. While little research exists on how to best nurture a child through such a difficult time, experts at Children’s Hospital of Philadelphia offer some communication strategies for explaining death to a child. 

Below are a few key points to assist parents through these difficult conversations.

• Use accurate terms to describe what happened, e.g. the person died or they are dead. Depending on the age of the child, you may need to clarify this in very simple terms, such as “Their body no longer works and they are not going to be here with us anymore.” Avoid vague euphemisms such as, “passed away” or “gone to sleep,” which can confuse and frighten a young child.
  
  
• If the child is asking questions about the death, ask clarifying questions before providing an answer: “What makes you curious about that?” or “What made you think about that?” Listening to their responses may help you better understand the child’s fears and be better prepared to reassure them. 
  
  
• If you don’t know an answer to a question a child asks, be honest and tell them you don’t know, but you will try to find out. 
  
  
• Children learn best by watching and listening to adults, so model honest communication and express your feelings openly. Let the child know that you are sad and miss the loved one who died very much. Talk about good times and memories and encourage the child to share their thoughts. Displays of intense emotion should be saved for private time, but crying in front of your children shows them that they can express their feelings too. 
  
  
• Don’t overload a child with information. Answer their questions honestly and thoroughly, then give them time to just  “be kids.” They will let you know when they are ready to talk some more. 
  
  
• Keep in mind that a child’s understanding of death is influenced by their age. Here is a brief overview of children’s perception of death at various developmental stages: 

Toddlers

Toddlers are not able to comprehend death and do not grieve in the same way as adults. However, they can sense the emotions of those around them and may feel uneasy, confused, or scared if others are sad and upset. Honesty is the best policy when discussing death with a toddler. For instance, you could say something like “Grandma has died, and we won’t be able to see her again.” Let your toddler know that it is normal to feel sad when someone you love dies. Even though they may not fully understand what has happened, they should be encouraged to express their emotions and share their concerns. 

Preschoolers

Children aged 4 to 6 don’t fully grasp the concept of death, perceiving it as temporary and reversible. They are also prone to magical thinking and may blame themselves for the loved one’s death. For example, if they felt angry at mom or dad and they are suddenly gone, they may believe their anger caused the parent to disappear. Open and honest communication with your child is crucial at this time. It’s important to explain that death is permanent, and no one is to blame. Don’t shy away from difficult questions such as, “Will I die?” or “Will you die?” Offer meaningful, yet reassuring, explanations such as, “Everyone dies someday. But I plan on us staying together for a long, long time”.

School age children

Between ages 6 and 12, children develop an understanding of death through personal experiences, like seeing a dead insect or bird. In this way, they slowly learn that death means the absence of life. With that said, younger children may still need help grasping death’s permanence. You may need to explain in very concrete terms that the person they love is no longer alive and  can no longer eat, drink or move. Encouraging the child to attend the funeral or visitation can reinforce that death is irreversible and a natural part of the cycle of life. 

Teenagers

Teens generally comprehend the notion of death (although they often presume they are invulnerable), recognizing that it is an irreversible loss. They grieve and mourn as deeply as adults, but because they strive for emotional independence, they may express themselves more openly with peers than with you. In some cases, especially if the teen had a difficult relationship with the parent who died, they may act out in disturbing and even self-destructive ways. This is normal, but it’s important to set boundaries as to what is acceptable and what is not. Let the child know you are there for them, but at the same time emphasize that any behavior that puts them in harm’s way is not an acceptable outlet for their grief. 

Seek out support

Helping children navigate the complex landscape of the terminal illness and eventual death of a parent is an almost insurmountable task, especially if you are also caring for your ailing spouse. It’s important to recognize that you can’t do it all alone, and to reach out to the community and health care resources for help. If your loved one is in hospice, the hospice provider may be able to refer you to an agency or organization that can provide respite assistance or emotional support. School counselors may also play an important role in helping a child who is struggling with their emotions both in and out of the classroom. You might also consider taking your child to a mental health professional who can provide a listening ear and help the child practice ways to cope with what is happening. 

Age-appropriate books may also be a wonderful way to help your children express their fears and feel less alone. See our Healing Library to find books for adults and children who are struggling to make sense of serious illness, loss and grief. 

Sources

“Current Approaches to Helping Children Cope with a Parent’s Terminal Illness”. American Cancer Society Journal. https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/canjclin.56.4.197

“Explaining Death to a Child”. Children’s Hospital of Philadelphia. https://www.chop.edu/health-resources/explaining-death-child 

“Telling a child someone is dying”. Marie Curie. https://www.mariecurie.org.uk/help/support/diagnosed/talking-children/children

A terminal illness affects the entire family, and relationship dynamics are certain to change. According to the National Cancer Institute, some areas that often change include the following:

• Roles: In every relationship, partners tend to assume certain roles. For example, one may be the “take charge” person who handles most of the planning and decision making, while the other assumes a more passive role. But when a spouse becomes ill, these roles are very often reversed. The adjustment can be difficult for both people involved. 
  
  
• Responsibilities: Just as each partner in a relationship takes on specific roles, each partner usually handles certain responsibilities. For example, one person may take care of the cooking and cleaning, while the other takes care of the yard and pays the bills. But when one partner becomes ill, the other partner will need to shoulder more responsibility in addition to assuming a caretaking role. 
  
  
• Physical and emotional needs: It can be very difficult for a person who’s accustomed to functioning independently to ask for help with things like fixing meals or getting dressed. Similarly, partners may find it hard to discuss how they’re feeling about the diagnosis and the changes taking place in their lives. But asking for help and giving and receiving emotional support is especially important during this challenging time. 
  
  
• Physical intimacy: Serious illness and the side effects of treatment may have significant effects on both sexual performance and sexual desire. Nonetheless, couples can still share physical intimacy in other ways. If talking about intimacy is uncomfortable for either partner, a therapist or social worker may be able to facilitate communication and offer suggestions that may help. 

Additionally, adult children or children in their teens may need to take on more responsibilities when a parent is ill, which is often quite challenging for both the parent and the child. Depending on the child’s age and level of emotional maturity, they may resent having to devote time to caretaking or household chores or working a part-time job to help pay the bills. Or they may participate very willingly, but still miss doing things they enjoy. In either case, the parent who is ill will often feel guilty for burdening their child, which can worsen feelings of helplessness, hopelessness or despair. 

In almost every situation, family members of someone who is seriously ill will also feel a sense of loss. Even though their loved one is still alive, they are not the same person they were before. They may look different, be less able to take part in day-to-day activities and even have trouble communicating at times. They also may be suffering physically and emotionally, which can cause everyone in the family to lose hope that their life will ever improve. These types of losses compound the anticipatory grief that the family is already experiencing because they know their loved one is going to die. While this can be quite painful for everyone, it is a normal reaction to what the family, both individually and collectively, is going through.  

Sources

“Coping With Cancer – Changes for the Family”. National Cancer Institute. https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/changes-for-family

The Family and Medical Leave Act is a federal labor law that requires covered employers to provide eligible employees with up to 12 weeks of unpaid leave with assurance of job protection throughout the leave period. The law applies to all companies with at least 50 employees, public agencies, and public or private elementary and secondary schools. FMLA enables employees to take reasonable leave for covered medical and family reasons while upholding equal employment opportunities for everyone. Additionally, the law requires employers to maintain group health benefits for those employees during their unpaid leave. 

Per the law, employees who are eligible for FMLA are entitled to receive twelve workweeks of leave in 12 months for the following reasons: 

• A serious health condition that prevents employees from performing essential functions of their job 
• The birth of a child or to care for the newborn within one year of the birth 
• Providing care for the employee’s child, spouse, or parent with a serious health condition 
• Placement with an employee of a child for foster care or adoption and to provide care for a newly placed child within one year of the placement 
• Qualifying circumstances based on the employee’s spouse, daughter, son, or parent as a military member on covered active duty

Employees are also entitled to receive twenty-six workweeks of leave during a 12-month period if they need to provide care for a covered member of the U.S. armed forces with a serious condition or injury. This applies if the eligible employee is the service member’s spouse, daughter, son, parent, or next of kin. Ultimately, FMLA ensures that employees can take the time they need to care for themselves or loved ones without the risk of losing their jobs. Since its implementation in 1993, FMLA has had a significant impact on the lives of millions of employees and their families. 

Sources
“Family and Medical Leave (FMLA)”. U.S. Department of Labor. https://www.dol.gov/agencies/whd/fmla

Whether embarking on a dream vacation, visiting loved ones or moving to another location, terminally ill patients can travel to their desired destination with some planning and effort. However, healthcare professionals highly recommend that patients first check with their physician for medical clearance to ensure they can travel safely. There may be circumstances when travel is not advisable, dependent upon prognosis, symptoms, or decline. Some risks associated with travel for terminally ill patients include:

• Reservation revisions or cancellations due to complications or progression of illness
• Urgent medical care is needed while away from home
• Emergency medical evacuation in the event the patient needs to return home for specialized care
• Death due to stressors associated with travel or patient decline

Insurance Considerations

For patients receiving hospice care, benefits may be transferable and applied to another hospice company near a chosen destination. Staff often arrange to have another hospice company on standby if their coverage area does not extend that far. If there is no hospice provider available and a medical emergency occurs, the patient may need to go to an Emergency Room. In that case, the Medicare hospice benefit may not apply.

It is also essential that any terminally ill person who plans to travel checks with their insurer to determine if it will pay for care in the location they’re visiting, especially if traveling internationally. In all but three limited circumstances, Original Medicare does not pay for services received at a foreign hospital (a hospital outside the contiguous U.S. states, Hawaii, Alaska or the U.S. territories of Puerto Rico, Guam, the U.S. Virgin Islands, American Samoa, and the Northern Mariana Islands). Medigap plans may cover up to 80% of the costs you incur when visiting a foreign country but always check with your insurer to learn what’s covered and what may not be. Medicare replacement plans (also called Medicare Advantage Plans or Medicare Part C) typically follow the same rules as Original Medicare, so the cost of care provided in a foreign country, including drugs and emergency services, will almost certainly fall on the patient or their estate. 

Essential considerations when traveling by airplane

While air travel may be challenging due to cabin pressure and stressors associated with security, terminally ill patients can travel by air if no alternative options are available. Traveling with a companion who can manage all travel details during the patient’s trip is best. Also reach out to the selected airline to arrange special assistance before finalizing plans. This assistance may include oxygen, wheelchair transport, special boarding, seating, or meal accommodations. All medications and essential documentation, including a DNR if warranted, should always accompany the patient.

For those with exceptional challenges, companies like Medical Air Service or Angel MedFlight offer advanced medical care air transportation. These worldwide air ambulance services provide a flying ICU for patients with extensive medical needs.

Pre-existing conditions waivers for travel insurance

Since terminally ill patients have a higher risk of postponed, interrupted, or canceled trips, travel insurance may be ideal for protecting their investment. These policies can be expensive but may be worth the cost, particularly when planning to travel abroad.

However, it is important to note that many travel insurance companies do not offer waivers for pre-existing conditions. Companies offering a waiver generally require the patient to disclose all pre-existing conditions to guarantee coverage. This requirement helps to ensure a refund or partial refund should there be a trip delay, cancellation, or medical costs associated with a terminal diagnosis or comorbidities while away from home.

For example, Allianz Global, one of the largest insurers for travel, defines a pre-existing medical condition as follows: an injury, illness or medical condition that presented symptoms or caused someone to seek diagnosis, treatment by a doctor, or prescribed medications (new or additional) anytime within 120 days before and including the plan’s purchase date. Allianz Global Assistance does NOT cover pre-existing Alzheimer’s disease, bipolar disorder, or certain mental or nervous health conditions. Additionally, travel insurance will not pay for any non-emergency care, elective care, long-term care or experimental treatments the patient receives during their trip. 

Ultimately, it is always up to the consumer to understand what is covered and what is not when purchasing a travel insurance policy. It is also wise to note if there is a cap on the maximum amount of coverage offered. 

Sources

“A Guide to Travel Insurance for Cancer Patients”. Allianz. https://www.allianztravelinsurance.com/travel/medical/travel-insurance-for-cancer-patients.htm?accam=F202942&gclid=CjwKCAiAxP2eBhBiEiwA5puhNQNqlbTb1TA0VL4fd05xn3TQzKGGgJlgRYkF7nMorAzlqQQoOaMpnxoCkt4QAvD_BwE 

“Fact Sheet: Medicare Coverage Outside the United States”. Medicare.gov. https://www.medicare.gov/Pubs/pdf/11037-Medicare-Coverage-Outside-United-States.pdf

“Pack Safe: Oxygen – Compressed and Liquid”. Federal Aviation Administration. https://www.faa.gov/hazmat/packsafe/more_info/?hazmat=33 

“Can terminally ill patients fly commercially, or should an air ambulance be used?” Medical Air Service. https://www.medical-air-service.com/blog/can-terminally-ill-patients-fly-commercially-or-should-an-air-ambulance-be-used_8018.html 

“Advanced Medical Care and Air Transportation”. Angel MedFlight. https://angelmedflight.com/request-air-ambulance-medical-flight/

Whether your employer is required to provide time off for treatment and care depends on your state and local laws, as well as the number of employees in your workplace. Options such as the Family and Medical Leave Act (FMLA) are often helpful to employees who need to take time off to care for their own health or provide care for a loved one, but this provision only applies to unpaid, job-protected leave.  There aren’t any federal laws that require private employers to provide paid sick leave, but there are many states and local jurisdictions that have established their own paid sick leave laws within the past decade. Generally, these laws require employers to provide a designated amount of paid time off per year.

If your employer is required by state or local law to provide paid sick leave, the amount of time that can be used when you are ill will either accrue based on the number of hours worked per week or will already be accessible from a bank of sick time that refreshes at the beginning of each year. Depending on the laws in your area, this paid time off can be used to take care of yourself, someone in your family, or a friend. States and municipalities that have established mandatory paid sick leave laws include: 

• Arizona 
• California
• Colorado
• Connecticut
• Illinois 
• Maine
• Maryland
• Massachusetts
• Michigan
• Nevada
• New Jersey
• New Mexico
• New York
• Oregon
• Rhode Island
• Vermont
• Washington
• District of Columbia 

Ultimately, it is important to review if any laws in your state apply to paid sick leave and to ensure that you fully understand your rights. Most employers already have policies in place regarding paid time off and these are typically detailed in the employee handbook. If you have any further questions, a general best practice is to contact the human resources department at your workplace. 

Sources 

“Paid Sick Leave Laws by State for 2024”. Paycor. https://www.paycor.com/resource-center/articles/paid-sick-leave-laws-by-state/

“Sick Leave”. U.S. Department of Labor. https://www.dol.gov/general/topic/workhours/sickleave

Although the decision about how to spend your days when you have a life-limiting illness is a personal one, many people choose to work if they can. Not only does work provide an income, it also provides a sense of purpose, which can boost self-esteem. What’s more, many employees receive insurance coverage through their employer’s health plan that would be prohibitively expensive if they had to pay for it on their own.  

If you choose to continue working, talk to your doctor and your employer about your plans. You may need to modify your work schedule or change your job responsibilities for a while. Keep in mind, too, that your employer cannot fire you or refuse to accommodate your request if your doctor says you’re disabled and need these accommodations to return to work. Such actions are prohibited by the Americans with Disabilities Act. And if you’re seeking employment, you do not have to divulge your diagnosis to prospective employers unless it would have a direct impact on your ability to do the job you seek, according to the National Cancer Institute. 

If you cannot work due to your physical limitations and are currently employed, you may be protected under the Family Medical Leave Act (FMLA) of 1993. According to the American Cancer Society, this federal legislation requires that employers grant eligible employees up to 12 weeks of unpaid leave per year for certain family or medical reasons. The employer must maintain the employee’s group health benefits during the leave and, except in certain circumstances, the employee must be given the same job or an equivalent one when they return to work. 

Situations covered by the FMLA include the following: 

• The birth of a child and caring for a newborn
• Adopting a child or bringing a foster child into your home
• Providing care for an immediate family member such as a child, spouse or parent (but not a parent-in-law)
• Inability to work because of a serious health condition

You should also be aware, however, that not everyone is eligible for family medical leave under FMLA. In order to be eligible, you must meet these requirements: 

• You have worked for the employer for at least 12 months (the employment does not have to be continuous)
• You have worked at least 1,250 hours for the employer in the past 12 months (this is about 25 hours per week)
• You work at a location where the company employs 50 or more people within a radius of 75 miles (for example, if the employer owns a chain of six car dealerships within a 50-mile radius, and each one employees 10 people for a total of 60 employees)

All of these criteria must be met for the employee to be eligible. However, some exceptions for military personnel and other types of employees may apply. For example, according to the U.S. Department of Labor, public sector employees (e.g. employees of state, local or federal agencies) and primary or secondary school teachers are covered regardless of the number of people the employer employs. 

If you have questions about eligibility or need guidance in exercising your rights under FMLA, visit the Department of Labor, Wage and Hour Division or call its toll-free information and help line at 1-866-4-USWAGE (1-866-487-9423) between the hours of 8 a.m. and 5 p.m. in your local time zone. 

Sources

“Family Medical Leave Act”. American Cancer Society. https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/family-and-medical-leave-act.html 

“Coping with Cancer/Going Back to Work”. National Cancer Institute. https://www.cancer.gov/about-cancer/coping/day-to-day/back-to-work 

Fact Sheet #28: “The Family and Medical Leave Act”. U.S. Department of Labor. https://www.dol.gov/whd/regs/compliance/whdfs28.htm

It may be beneficial for someone living with a terminal illness to create a bucket list or a wish list of things they hope to achieve before they die. These goals can be simple, random, or grand ideas: take a trip, stay in a luxurious hotel, visit a special place, try something daring, renew wedding vows, learn something new, see a live concert, attend a sports match, or reconnect with someone special. The ideas are as endless as one’s imagination. Simply writing them down may spur a sense of pleasure whether any of them are attainable or not.

Current research based on open-ended questionnaires completed by terminally ill patients revealed some common themes for wish lists. Immediate goals included taking care of final matters, regaining health, and dying comfortably. But the majority of wishes were more personal, and related to travel, activities, or spending time with family. These results are nearly identical to those gathered from a similar study conducted by Stanford University in 2018. Both studies suggest that asking patients to share an end-of-life bucket list would be an ideal framework for more person-centered care by physicians.

The idea of creating a bucket list was catapulted into the spotlight with the release of the film, The Bucket List, in 2007. The movie stars Jack Nicholson and Morgan Freeman. Both are terminally ill and leave the hospital together on a journey to check off their lists of life goals. 

Although Nicholson’s character was well-off enough to pay for their excursions, not everyone has the financial ability to make a special dream come true. Fortunately, many Make-A-Wish Style Programs exist that help terminally ill adult patients achieve one special item on their bucket list. These non-profit organizations provide funds and help coordinate the activity the person desires. In some cases, they will incorporate family members in the wish as well, allowing the dying person to spend time creating new memories while doing something enjoyable.  

Sources

“What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care.” BMC Palliative Care. https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-022-00928-1

Legacy projects, bucket lists, rituals, and spiritual or religious practices are all meaning-making activities that offer opportunities for reflection, conversation, and a pathway toward acceptance. These activities can provide a sense of comfort and emphasize the value and importance of the connection shared with your loved one. Although the following suggestions are common choices for meaning-making activities, personalizing and customizing your activities to your relationship with your loved one is also greatly encouraged. 

One of the most common meaning-making activities is working on a legacy project with your loved one. This can involve creating a photo album or scrapbook that details important milestones and cherished memories throughout their life or making video and audio recordings of stories about their personal experiences. Asking them to write a letter to you or other loved ones can be another activity that creates a tangible memory or reminder of a legacy that you can revisit at a later time. These types of activities help your loved one to reflect on their own legacy while also providing opportunities for other loved ones to better understand their life experiences. 

If your loved one has a bucket list of experiences that they would like to have before the end of life, participating in these experiences together can be another great way to maintain their legacy. Your loved one might have unique interests or hobbies that you only associate with them, and this is an opportunity to share those moments with them. At the same time you will be supporting their ability to achieve a greater sense of accomplishment and quality of life. If your loved one struggles with mobility, try thinking of creative ways that you can help them achieve the goals and experiences on their bucket list. 

Sharing in spiritual or religious practices together can also contribute to the meaning-making process if your loved one is a person of faith. This might involve meditation, prayer, discussing beliefs and values, reading sacred texts, or singing hymns or chants. Engaging in these activities with your loved one can help them find peace and meaning within their spiritual or religious traditions while also serving as a way to deepen their connection with you through the shared experience. 

Finally, gathering together with your loved one and other family members or friends to focus on planning for the rituals or ceremonies that will take place after death can also be a meaning-making activity. Although it can be difficult to discuss these topics with your loved one, including them in the planning discussions and arrangements can provide them with the opportunity to share their preferences about how they want to be remembered and honored after their death. 

Sources:

“Spirituality in Patients at the End of Life – is It Necessary? A Qualitative Approach to the Protagonists.” National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8751211/ 

“62 Inspiring and Exciting Bucket List Ideas for Cancer Patients”. OmniCare Hospice. https://omnicarehospice.com/bucket-list-ideas-for-cancer-patients/ 

“How to Bring More Meaning to Dying”. Greater Good Magazine. https://greatergood.berkeley.edu/article/item/how_to_bring_more_meaning_to_dying 
“Legacy Activities”. Hospice Waterloo Region. https://www.hospicewaterloo.ca/legacy-activities/

Supporting someone with a terminal illness may require some mental, emotional, or spiritual preparation. When we know someone is facing a life-threatening illness, it can spur us to question our own mortality in a way that may feel uncomfortable. Fears and personal feelings can surface. Or, we may feel anticipatory grief as we grapple with the loss of someone we care about.

But supporting someone at the end-of-life can be as simple as meaningful gestures or thoughtful words. Caring about how we might positively affect another human being is a noble, beautiful, and caring thing to do. Whether it is a loved one, friend, neighbor, or acquaintance, doing what we can to help them overcome an immediate struggle or to brighten their day can bring a sense of joy to both the giver and the receiver. 

While there are no right or wrong ways to support a person with a terminal illness, below are a few suggestions that can help someone to navigate this sensitive territory.   

Mindful ways to offer support 

• Convey that you care, even if you do not know exactly what to say.

 “I’m sorry that this is happening to you,” or “I’m here if you need to talk to someone,” are good ways to express that you care.

• Assure them that they can depend on you.  

Be specific about how or what you can do for them. Perhaps offer to help before help is needed. For example, “Can I bring a lasagna for dinner on Thursday for you?” or “I’m headed to the store to pick up your favorite snack; what else do you need that I can bring to you?” 

• Let them know how they have positively impacted your life.

Sharing what makes your relationship with this person special can be a meaningful experience for them, as well as you.

Phrases to Avoid

• Trite phrases such as, “I know how you feel.” “It’s going to be okay.” “You’ll beat this thing.”

 These are things we say when we want to reassure someone that all is well. However a terminal illness is just that, terminal. Do your best to avoid using these phrases as a means of conveying comfort. 

• “I will pray for you.”

Although it is meant to be comforting, an offer of prayers can be construed as meaningless or even offensive to someone who is not spiritual or religious. If you are not sure about their beliefs or views on God, death, or the afterlife, perhaps ask, and then offer to listen. If it seems appropriate, you can offer to pray with them instead of merely for them.

• “See you tomorrow/next week.” 

Disease progression in terminal illness can be very unpredictable. Try not to mention a specific time when you will return. Instead, say something, like “I will check back on you soon.”

Offer compassion and a listening ear

Your friend or loved one is a person with an illness, not an ill person. The diagnosis is not their sole identity, and they may still enjoy participating in many activities they enjoyed before they became seriously ill. Do your best to include them whenever possible. Continue to invite them to events, even if you suspect they may not be physically able to attend them. And although they may need more help as their disease progresses, don’t treat them as if they are helpless. Maintaining some level of independence as long as possible can help someone to retain a sense of dignity, self-worth and quality of life. 

Overall, the best thing you can do to support someone with a terminal illness is to engage in active listening. Follow their lead. Be patient. If they want to share their thoughts, feelings, or fears – listen without judgment. Meet them where they are. Maybe hold their hand. 

Being present is the greatest gift you can give.

Sources

“What Is Active Listening? Psychology Experts Share 5 Steps to Enhance Your Communication Skills”. Good Housekeeping. https://www.goodhousekeeping.com/health/wellness/a39601657/what-is-active-listening/

There are various types of support groups available to people diagnosed with a terminal illness. Support groups can be social-media oriented, online forums, zoom meetups, telephone chat lines, or conducted in person. Groups may be open to all or only to those who meet certain criteria (for example, a specific diagnosis). Meeting intervals can vary from weekly to monthly or as needed. Regardless of the format, support groups can be a valuable outlet for those who feel uncertain or anxious about what comes next.

Choosing which group is best suited to your needs will depend upon the type of support you are seeking. Do you need emotional support? Would you feel comfortable sharing and learning from others with similar experiences? Perhaps you prefer to receive guidance from a professional facilitator? Or, maybe you just want some education or tips about how to cope with your disease and decline. Identifying what you are looking for will help you find a group that works for you. 

You should also be aware that some support groups may be designed for those with a specific disease, such as breast cancer or heart disease. There may also be age-specific groups or those that are open to caregivers as well as patients. 

Support group formats can also vary. Some of the most common include:

• Peer-led or self-help group — members lead and facilitate discussion among themselves
• Professional-led groups — a trained professional (counselor, social worker, psychologist, therapist) leads the dialogue among members
• Informational – a professional facilitator or guest speaker offers expert advice to educate participants.
• Online forums – many groups offer full autonomy if you wish to remain anonymous when posting

Benefits of Support Groups for Terminally Ill Patients

Although no formal studies have been conducted on the impact of support groups for people living with a terminal illness, Ariel Young of Portland State University in Oregon offers a literature review in her thesis: The Impact of Support Groups for People with Terminal Cancer on Preparatory Grief.

Her review of currently available research indicates that support groups can help terminal cancer patients develop more effective coping strategies when they have been aided in expressing their grief over losses which occur early on in the illness. These coping strategies include constructive emotional expression, managing physical symptoms, and maintaining realistic optimism about what remains of life. The author concludes that better coping habits may contribute to a longer survival time. 

Other benefits of participating in a support group may include:

• Fostering a sense of community; feeling less lonely or isolated
•  Reducing feelings of distress, depression, or anxiety
•  Positively affecting others (which can positively impact yourself)
• Improving an understanding or your disease experience
• Getting practical feedback about palliative care options
• Learning about valuable health or community resources

Where to Find a Support Group

There are many ways to find a support group to help you cope with a terminal or life-limiting diagnosis. As a first step, you may wish to:

•  Call your local hospital system or cancer center to ask about their support programs.
• Ask your physician, social worker, or nurse to suggest groups.
• Talk to other patients; ask if they have recommendations.
•  Do an online search for groups related to your diagnosis in your local area.

You can also check with an organization that offers resources and support for people living with your diagnosis. See our Additional Resources to learn more. 

Sources
“Life Near Death: The Impact of Support Groups for People with Terminal Cancer on Preparatory Grief” . Portland State University. https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1063&context=honorstheses

The Consolidated Omnibus Budget Reconciliation Act (or COBRA is a federal law that provides employees and their families the right to choose continuing group health benefits provided by a group health plan for a limited time after losing health benefits from their employer. It may be offered in circumstances such as the loss of a job, reduction in work hours, a transition between jobs, or major life events such as death and divorce. Group health plans must provide coverage under COBRA if they are maintained by state or local governments, or if they are maintained by private-sector employers with at least 20 employees. Most COBRA coverage lasts from 18 to 36 months, although this varies based on the qualifying event.

Although COBRA helps individuals maintain coverage, it can be financially unaffordable for many families because it requires payment of the full premium of up to 102% of the plan’s cost. It is typically more expensive than the cost of coverage for active employees since employers tend to pay for a large portion of employees’ coverage. Most individuals will usually receive a notification informing them that COBRA coverage will be available to them. In most instances, individuals who are eligible for COBRA have 60 days to select coverage after they are notified. If they are not eligible for COBRA, contacting the state insurance commissioner’s office may provide more insight into alternative coverage options which are available, such as mini-COBRA laws or other laws that are similar to the general provisions of COBRA.

Sources

“Continuation of Health Coverage (COBRA)”. U.S. Department of Labor. https://www.dol.gov/general/topic/health-plans/cobra 

“FAQs on COBRA Continuation Health Coverage for Work”. U.S. Department of Labor. https://www.dol.gov/sites/dolgov/files/ebsa/about-ebsa/our-activities/resource-center/faqs/cobra-continuation-coverage.pdf

Different forms of financial assistance are available for patients with terminal illnesses and their families. These resources are often helpful in offsetting some of the costs associated with end-of-life care. There are many charitable patient assistance programs, some of which help patients with specific conditions and others that assist based on specific needs. Assistance can include transportation costs, housing costs, food costs, phone and internet access and more. 

Organizations such as the Patient Advocate Foundation or FundFinder can help match patients and their families to potential financial assistance opportunities. Some nonprofit programs assist with copayments for medication and related deductibles. Additionally, government programs such as Medicaid and Medicare can cover costs for medical equipment, hospice, palliative care, and other associated expenses. Disease-specific foundations also tend to provide grants and similar funding to support patients and their families. 

It is important to understand that seeking financial assistance for medical care or related needs should not be a source of shame or embarrassment. Instead, it should be viewed as taking a proactive step to maintain continuity of care and comfort during the final stages of life. Although paying for care for a terminal illness can pose a significant financial challenge, patients and their families can find assurance in knowing that there are numerous organizations and programs that are willing to help. 

Sources

“Financial Assistance Programs”. American Lung Association. https://www.lung.org/help-support/financial-assistance-programs 

“Programs and Resources to Help with Cancer-related Expenses”. American Cancer Society. https://www.cancer.org/cancer/financial-insurance-matters/managing-health-insurance/programs-and-resources-to-help-with-cancer-related-expenses.html

 A life insurance terminal illness benefit or accelerated death benefit can help financially support you and your family when someone has been diagnosed with a terminal illness. This benefit allows you to access all or a portion of the policy’s cash value prior to death, which could ease stressful burdens associated with costs for end-of-life care. This supplemental benefit may also be called “living benefits” or “terminal illness rider.” It is important to note that these types of benefits are not included in every policy; you may need to select it as an additional option and/or pay an extra fee.

If you already have life insurance, contact your agent or company to find out if your current policy has this type of benefit. If not, inquire whether it can be added now, if needed, or later if you are planning for unforeseen circumstances. There is never an obligation to make any claim while the covered person is still alive, but it may bring comfort to know that this option is available.

If you or a loved one has recently been diagnosed with a terminal illness and do not already own a life insurance policy, you may still be able to obtain one. A guaranteed life insurance policy is considered an alternative plan for those with significant health issues, including terminal illness. These types of policies provide smaller death benefits that help families pay for funeral or burial expenses. They do not, however, include the terminal illness benefit or cash value. It will be more expensive to secure this type of policy, but worth a call to companies if you think it may still be beneficial.

How terminal illness benefits work

• You must first qualify to receive benefits based on a confirmed medical prognosis of less than 6 months to live and the specific policy coverage
• If qualified, the benefit allows access to either a portion or all of the policy’s cash value in advance of your death based upon what your policy grants
• Depending upon how much of the total sum is paid to you up front, a lesser amount or none at all will be dispersed of the policy after death
• Benefits paid out to a terminally ill person are not taxed as income
• If it is a joint insurance policy, this type of benefit coverage is generally paid only once, but it can be utilized by either of the insured, as warranted.
• If the policy is due to expire before the person is expected to die, the company could refuse any claim for terminal illness benefits made within the final months of the policy’s active term. The family would then receive full sum of the policy upon their death.

We recommend that you call your insurance company to verify how your particular coverage applies to these benefits. 

Without a terminal illness benefit, you may be able to borrow against your life insurance policy. You can only do so if you have a whole life or universal life insurance type of policy, as these policies gain cash value. Term life insurance policies do not qualify. Any amount borrowed will reduce the overall death benefit. The loan will also accrue interest over time. Contact your agent or insurance company to initiate an application if you have had the policy long enough to amass a cash value to borrow against. You may also wish to review some key factors involved in borrowing against a policy before taking out the loan. 

Sources
“What Is an Accelerated Death Benefit in Life Insurance?” Investopedia. https://www.investopedia.com/terms/a/accelerated_death_benefit.asp 

“Guaranteed Issue Life Insurance: Pros and Cons”. Forbes Advisor. https://www.forbes.com/advisor/life-insurance/guaranteed-life-insurance/. 

“Meaning, Types & Benefits” Forbes Advisor. https://www.forbes.com/advisor/in/life-insurance/whole-life-insurance/ 

“What Is Universal Life Insurance?” Forbes Advisor. https://www.forbes.com/advisor/life-insurance/universal-life-insurance/

“What Is Term Life Insurance?” Forbes Advisor. https://www.forbes.com/advisor/life-insurance/choosing-the-right-term-life-insurance/

“How Can I Borrow Money From My Life Insurance Policy?” Forbes Advisor. https://www.forbes.com/advisor/life-insurance/dangers-of-policy-loans/

It is best to approach your interactions with patience and empathy, understanding that you will likely need to navigate these challenging conversations over time. Denial is often a psychological defense mechanism that emerges to cope with the emotional overwhelm of the end of life. Your loved one may try to maintain the belief that their condition will improve or that they can be cured, even if their healthcare provider presents significant information or data that indicates otherwise. However, it is important to understand that receiving a terminal prognosis is deeply distressing, even if someone has spent years living with a chronic condition that typically has a poor prognosis.

Instead of addressing your loved one’s denial in a confrontational or direct manner, consider how you might gradually introduce the topic in the upcoming days or weeks. There can be many reasons why someone might be in denial that they are dying. Some individuals find it difficult to accept the finality of their diagnoses or may not want to lose hope, especially if they have been pursuing curative treatments for an extended period of time. Understandably, many individuals have a fear of death and may experience denial to manage the anxiety surrounding their mortality. Gradually approaching the topic and allowing your loved one to discuss it on their terms helps to create a safe space for more open dialogue regarding their emotions and thoughts about the situation. In those moments, listening to your loved one and validating their emotions is crucial. Try to avoid providing advice. Remember, you cannot ‘fix’ the situation, but you can support your loved one through the emotions and concerns surrounding the dying process. 

Additionally, you can collaborate with your loved one’s care team for assistance in navigating these conversations. As healthcare professionals, they can provide objective information and answer important questions that your loved one may have regarding their prognosis. Introducing a mental health professional such as a counselor, therapist, or social worker can also be beneficial in helping your loved one navigate their anticipatory grief or anxiety about death and dying. By being considerate and thoughtful in your approach, you can help ensure that your loved one’s remaining time is as peaceful and comfortable as possible. 

Sources

“Anticipatory Grief: Symptoms and How to Cope.” Cleveland Clinic. https://health.clevelandclinic.org/dealing-with-anticipatory-grief 

“Coping with Emotions as You Near the End of Life.” American Cancer Society. https://www.cancer.org/cancer/end-of-life-care/nearing-the-end-of-life/emotions.html 

“Providing Care and Comfort at the End of Life.” National Institute on Aging. https://www.nia.nih.gov/health/end-life/providing-care-and-comfort-end-life#emotional 

The cost of a second opinion varies significantly. If you are on Medicare and your doctor refers you for a second opinion, the visit will likely be covered under Medicare Part B; you will only have to pay a portion of the bill — usually 20%. The same holds true for any additional tests or procedures the second physician believes are necessary to confirm a diagnosis. Medicare will pay for these according to its established fee schedule, and you will only be responsible for whatever cost-sharing Medicare requires. Remember, however, that any doctors, hospitals and providers (for example, labs and pharmacies) you use must accept Medicare or you will have to assume 100% of that portion of the cost. 

Private health insurers will also pay for a second opinion in many situations, as will most Medicare Advantage Plans. However, you will most likely need to go to an in-network provider or assume a much larger share of the cost. With that being said, private insurers (which includes Medicare Advantage plans) may have limitations on when a second opinion is allowed, so always check with your health plan before scheduling an appointment, or you could wind up paying for the entire evaluation yourself. 

Another option for getting a second opinion is to schedule a consultation online. Many of the top medical centers in the U.S. offer this option, although you will typically need to pay for the consultation up front. (You may also use funds from a Health Savings Account or Flexible Savings Account.) Cleveland Clinic, for example, offers virtual second opinions for a wide array of conditions, including cancer, heart disease and COPD. The cost is $1,850 as of July 2024 and includes an intake meeting with a nurse case manager and a review of all X-rays and medical tests by a multidisciplinary team. You will also meet with a specialist virtually and receive a written report of their findings. 

Stanford Medicine in Palo Alto, California, offers a similar service for patients with cancer, heart disease and a number of other life-limiting illnesses. The cost as of this writing is $700 and includes collecting all relevant tests and reports, a review of your case by a qualified specialist and a written report. There are also a number of private, physician-run companies currently offering second opinions online. One of these, 2nd MD, provides a nurse case manager, a team member who obtains all of your medical records and a consultation with a specialist who is knowledgeable about your disease. They will also refer you to a local physician who accepts your insurance for follow-up if need be. According to company spokesperson Shelby Guerra, CMA, 2nd MD contracts with a number of employer-sponsored insurance plans. For patients who aren’t covered by insurance, the out-of-pocket cost for the service is $4,000. 

Sources

“Virtual Second Opinions”. Cleveland Clinic. https://my.clevelandclinic.org/online-services/virtual-second-opinions 

“Stanford Medicine Online Second Opinion Program”. Stanford Medicine. https://stanfordhealthcare.org/second-opinion/overview.html 

“Virtual second opinions with 2nd.MD”. 2nd MD. https://www.2nd.md/

Clinical depression is common in people who are living with a terminal illness. According to an article by medical ethicist Robert Fine, M.D., in the journal Baylor University Medical Center Proceedings, between 25% and 77% of terminally ill patients experience clinical depression at some point during the course of their disease. What’s more, the presence of depression often increases their suffering by contributing to anxiety and feelings of hopelessness, helplessness, guilt and despair. People who are depressed may also feel worthless, lack self esteem and have no interest in things they once enjoyed. Depression may also make the physical symptoms of the underlying disease, such as fatigue, sleeplessness, lack of appetite and pain, significantly worse. 

Depression is more likely to occur in seriously ill patients with advanced disease, since the burden of symptoms is likely to be higher and their psychological resources worn thin. Interacting with the outside world also becomes more difficult as physical challenges become more severe as the illness progresses, which can contribute to feelings of loneliness, isolation and despair. A history of depression, prior suicide attempts or substance abuse also make it more likely that a person will become depressed when they are seriously ill. A family history of depression (sometimes multigenerational) is often a contributing factor as well. 

Certainly, medication cannot “fix” a terminal illness, and moving through the grieving process is an important part of coming to terms with death. However, if a terminally ill person is clinically depressed, appropriate medication combined with psychological counseling may help ease their suffering and allow them to experience more joy during the time they have left. 

If you or a loved one is terminally ill and showing signs of depression, don’t assume that this is a response to the underlying disease. Speak with your healthcare provider about your concerns. They may want to add a psychotropic medication and/or involve a mental health professional in your care. 

Sources

 “Depression, anxiety, and delirium in the terminally ill patient”. National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291326/

“What Are the Causes and Symptoms of Depression?” WebMD. http://www.webmd.com/depression/guide/depression-symptoms-causes#1 

“Mental Health Medications”. National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/mental-health-medications/index.shtml

According to the American Cancer Society, people who are dying or who know their death is approaching experience a number of emotions. Some of these include:

• Fear: Many people say that they are afraid of dying, but what they often mean is that they fear certain things will happen as they die. For example, some people are terrified of dying alone; others fear physical pain and discomfort; while still others fear being dependent on others for their needs. Try to examine the fear, either for yourself or with your loved one, and pinpoint its cause. Then try to find ways to alleviate it through practical action. (For example, make a plan to have someone with the dying person at all times, or involve a palliative care or hospice team to help devise a plan for symptom control.)

• Anger: It’s perfectly normal for a dying person to be angry. Even people who aren’t actively dying may feel anger and resentment at losing abilities they once had, such as the ability to get around independently or drive a car. If you feel angry a good deal of the time and/or it is affecting your relationships with those around you, you may wish to speak to a counselor or mental health professional about learning ways to redirect those feelings in other ways.

• Guilt and Regret: A dying person may feel guilty for leaving loved ones behind, or regret for things they didn’t do while they had the chance. Understanding that everyone has regrets, but not allowing them to define who you are is a big step in allowing yourself to heal.

• Grief: Coming to terms with one’s mortality can lead to feelings of loss. Accepting death means giving up the illusion of immortality that we humans hold on to so stubbornly, and accepting that eventually we will cease to exist. Letting yourself feel that grief may allow for a period of introspection that can eventually lead to acceptance of what is to come. 

• Anxiety and Depression: Anxiety and depression are common in people living with a life-limiting illness, many of whom are trying to cope with challenging medical treatments along with the reality of approaching death. If anxiety and depression become overwhelming or debilitating, psychological counseling and/or medication can often help.

• Isolation and Loneliness: Terminal illness can impose a number of limitations on a person’s ability to interact with relatives, colleagues and friends. As time goes by, this can lead to intense loneliness, which is compounded by illness and infirmity. Fortunately, technology such as Facetime, Google Meet and Zoom have emerged to provide an effective bridge between frail individuals and their social network, as well as an avenue for communication with the healthcare team. 

Sources

“Coping with Emotions as You Near the End of Life”. American Cancer Society. https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life/emotions.html 

“Depression, anxiety, and delirium in the terminally ill patient”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC1291326/

Knowing you or a loved one has a terminal illness is often helpful because people who are informed about their prognosis can make informed decisions about their care. Although not everyone chooses to participate in care decisions in this way, knowing that their illness is progressing can help a person living with cancer or heart disease decide what therapies to pursue or decline, or when to transition from curative to comfort care. An accurate prognosis also gives a terminally ill person an opportunity to get their affairs in order, to make memories with loved ones and to say goodbye. 

Unfortunately, however, some patients never get the kind of information they need to make informed choices about their care as they approach the end of life. There are many reasons for this, but one of the most notable is the fragmentation that characterizes health care in the U.S. Patients living with a terminal illness typically have several doctors, including a primary care physician and one or more specialists involved in their care. If they visit an emergency room, they will see an ER doctor, and if they are admitted to the hospital, they’ll be in the care of a hospitalist, and perhaps an intensivist if they are sent to the ICU. With all these different doctors involved, end-of-life conversations sometimes simply don’t occur. 

Another reason why many patients aren’t told their illness is terminal is that doctors are uncomfortable talking to their patients about death. Although medical schools are beginning to teach their students about communicating with patients who are nearing the end of life, as recently as 2016, 88% of medical residents in one teaching hospital said they had no training in end-of-life discussions during their residency, and about half reported no formal training on end of life in medical school. Doctors who have been in practice for many years tend to have even less formal training, and may feel less equipped to discuss end-of-life care. As a result, many patients who are terminally ill are unaware of their prognosis and unprepared when they learn they are about to die. 

With that being said, people living with a serious illness have a right to ask questions of their care team, and many physicians welcome the opportunity to discuss prognosis and goals of care if the patient indicates they want to know more. It may be difficult to broach the subject, and some people may choose not to do so. If you feel you can benefit from more information, feel free to ask your treating physician to schedule a conversation about your values and goals. 

Sources

 “Hospitalisations of patients with cancer in the last stage of life. Reason to improve advance care planning?” National Library of Medicine.  https://pmc.ncbi.nlm.nih.gov/articles/PMC9788226/ 

 “Perspectives on death and dying: a study of resident comfort with End-of-life care”. BMC Medical Education. https://bmcmededuc.biomedcentral.com/articles/10.1186/s12909-016-0819-6 

 “Why many doctors still find it difficult to talk about dying with patients”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6312518/

As so much of our care is dependent on large institutions like hospitals and nursing homes, it is necessary for us to protect our “end-of-life rights.” This basically means the right to a final passing in dignity, comfort, and respect for our preferences and advance health care directives.

What are end-of-life choices or end-of-life rights? What manner of care and treatment am I entitled at my end-of-life? What do end-of-life rights mean for a dying patient? How can I ensure that these rights are respected?

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Things to Know:

• Be prepared to be proactive in defending your or your loved one’s right to die in a peaceful and compassionate manner.
• Of the approximately 3,500 people who die in U.S. hospitals each day, many receive inadequate pain treatment or have their advance health care directives ignored.
• Only one in four U.S. hospitals have patient care policies addressing palliative care or end-of-life hospice care.
• Studies show a majority of nursing home residents do not receive optimal end-of-life care.
• Many polls show a majority of Americans support aid in dying– what was formerly referred to as physician-assisted suicide– for the terminally ill, but this assistance is currently legal in only a handful of U.S. states.
• Should you wish to join those who are asking for legislation and medical policy changes protecting our end-of-life rights, you have the option to join Compassion & Choices.

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What are end-of-life rights?

The goal of end-of-life rights is for all humans to die in a compassionate manner. Unfortunately, most end-of-life rights are not legally protected in the U.S. and are highly varied by state law. It may largely be your own responsibility to protect your end-of-life rights.

End-of-life rights include respecting your advance care directives and living wills, access to services such as hospice and support groups, access to a concierge physician and palliative care, and aid in dying information.

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If I die under medical or hospital care, will I be treated with compassion?

Unfortunately, your right to compassionate, dignified end-of-life care is far from guaranteed. About 6,500 people die in the U.S. every day. According to end-of-life expert Stephen P. Kiernan, about half of them die in hospitals “where pain is routinely under-treated, where unconcern with the patient’s emotional condition and disregard for the patient’s family are the norm, where advance directives are often ignored, and where most lives end following the withdrawal of excessive and futile medical technology.” Furthermore, about one quarter of all deaths occur in nursing homes where, Kiernan reports, “untreated pain is common, where boredom is a fact of life, where food is substandard and care insufficient, and where too many residents are subject to neglect or abuse.”

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What are hospice care and palliative care end-of-life programs?

Hospice care focuses on comfort and pain relief, and is usually employed for patients entering the final months of an terminal illness. Hospice care programs can be greatly beneficial, but far too many people never receive these services at all. While over 60% of hospitals with over 50 beds have a palliative care team, only one in four U.S. hospitals have patient care policies addressing end-of-life, hospice, or palliative care, according to a 2006 study by the American Association of Critical-Care Nurses. A study published in the July 13, 2005, Journal of the American Medical Association (JAMA), noted that a majority of nursing home residents do not receive optimal end-of-life care, and that hospice care is underutilized at nursing homes, because physicians are often unaware of their patients’ end-of-life preferences. A 1998 study published in JAMA showed 26% of nursing home patients with daily pain received no pain-relieving medication, despite the fact that all patients studied had Medicare coverage that would cover such medication costs. These findings confirm that obtaining adequate end-of-life care is not guaranteed, and it’s important to know your end-of-life rights for yourself and your loved ones.

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What about aid in dying, or physician-assisted suicide, at end-of-life?

Although polls show a majority of Americans support aid in dying for the terminally ill, such assistance is currently legal in only a few U.S. states.

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I am concerned about my end-of-life choices. What choices do I have?

Again, legally defined end-of-life choices have yet to be codified. According to the American Journal of Nursing’s “The Dying Patient’s Bill of Rights,” you and your loved ones have the right:

• To be treated as a living human being until death.
• To maintain a sense of hopefulness, however changing its focus may be.
• To be cared for by those who can maintain a sense of hopefulness, however changing this might be.
• To express feelings and emotions about approaching death in your own way.
• To participate in decisions concerning your care.
• To expect continuing medical and nursing attention even though “cure” goals have been changed to “comfort” goals.
• Not to die alone.
• To be free from pain.
• To have your questions answered honestly.
• Not to be deceived.
• To have help accepting death.
• To die in peace and dignity.
• To retain individuality and not be judged for decisions that may be contrary to the beliefs of others.
• To discuss and enlarge religious and/or spiritual experiences.
• To expect that the sanctity of the human body will be respected after death.
• To be cared for by caring, sensitive, knowledgeable people who will attempt to understand your needs.

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What can I do to help guarantee my end-of-life choices are respected?

1. Make sure you have advance health care directives and a relative or close friend who will see that your directives are honored.
2. Make sure your family members and closest friends understand your choices for end-of-life care.
3. If you become terminally ill, make arrangements for palliative or end-of-life hospice care.
4. Make sure you have a financial power of attorney for health care agreement and a living will allowing someone to manage finances for you, including insurance paperwork, should you become incapacitated.
5. Get involved. Join the many people who are asking for legislation and medical policy changes that address end-of-life issues. For more information about legislative and medical reform and how to get involved, you can contact Compassion & Choices.

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For more information:

Compassion & Choices, 800-247-7421

Last Rights: Rescuing the End of Life from the Medical System, by Stephen P. Kiernan (St. Martin’s Press, 2006)

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SevenPonds suggests the following resources for people living with a life-limiting or terminal illness:

Patient Assistance Programs 

These programs offer financial assistance with an array of treatment costs, including co-pays and medication costs.

Patient Services Inc. 

Patient Access Network

Patient Advocate Foundation

Health Wellness Foundation

National organizations 

National Hospice and Palliative Care Organization

Caringinfo ( offered by the National Hospice and Palliative Care Organization

The Second Opinion (free second opinion to cancer patients in California)

National Cancer Institute

Leukemia and Lymphoma Society

ALS Association

American Cancer Society

Alzheimer’s Association

National Institute on Aging – Alzheimer’s Disease and Related Dementias

National Heart Lung and Blood Institute

American Heart Association

National Kidney Foundation

National Center for Complementary and Integrative Health

Housing and transportation

American Cancer Society Hope Lodge Program (short-term housing during treatment)

Mercy Medical Angels (help with long-distance transportation for treatment)

American Cancer Society Road to Recovery (help with short-distance transportation to medical appointments)

Hospice Providers

Identifying a reputable hospice provider is one of the most critical decisions a family can make, as it directly impacts the quality of comfort, dignity, and specialized care a loved one receives during their final chapter. A high-quality hospice program goes far beyond basic medical management; it depends on a fully coordinated, compassionate team of doctors, nurses, social workers, and chaplains who seamlessly support both the patient’s physical needs and the family’s emotional well-being.

Opting for a certified, well-reviewed provider ensures strict adherence to safety standards, reliable 24/7 crisis responsiveness, and comprehensive grief support. For more guidance on navigating this process and selecting the right care team, please refer to our article, “How Do I Find a Hospice Program?”

Notable Palliative Care Experts

Dr. Joseph Lowy, M.D. — Clinical Professor, Department of Medicine at NYU Grossman School of Medicine: Director, Palliative Care, NYU Langone Health

Dr. Stephen Pantilat, M.D. — Distinguished Professor in Palliative Care and the Inaugural Chief of the Division of Palliative Medicine at UCSF

Dr. Stephanie Harman, M.D –.Associate Professor of Medicine Clinical Chief, Section of Palliative Care at Stanford Medicine Palliative Care Center of Excellence

Dr. Jessica Nutik-Zitter, M.D. Critical Care and Palliative Care, Highland Hospital, Oakland, CA

Dr. R. Sean Morrison, M.D. —  Professor of geriatrics and medicine; Director of the Hertzberg Palliative Care Institute, and Hermann Merkin Professor of Palliative Medicine , Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York City.

Dr. Laura Shoemaker, D.O., M.S.  — Assistant Professor of Medicine, Cleveland Clinic Lerner College of Medicine, Chair Department of Palliative & Supportive Care Cleveland Clinic

Dr. Ira Byock, M.D. — founder & Senior Vice President for Strategic Innovation of the Institute for Human Caring at Providence St. Joseph Health 

Dr. Diane E. Meier, M.D.  –– Vice Chair for Public Policy and Professor of Geriatrics and Palliative Medicine, Professor of Medical Ethics and the founder of the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York City. 

Dr. Dawn Gross, M.D. Palliative Care Physician, UCSF Medical Center, San
Francisco, California