What Is a “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