Hospice & Palliative Care

Jump Ahead to:

• What Is Palliative Care?
• The Palliative Care Team
• Where Does Palliative Care Happen?
• What Is Hospice Care?
• Where is Hospice Care Provided?
• How Many Patients Receive Palliative Care and Hospice?
• Who Receives Hospice Care?

Hospice and palliative care are two similar care models that focus on alleviating suffering, managing symptoms and providing emotional and spiritual support to people living with a serious, life-limiting illness. Yet while the two models overlap considerably, there are some significant differences between the two. 

What Is Palliative Care?

Palliative care is specialized care for people living with a serious illness. According to the Center to Advance Palliative Care, the goal of palliative care is to relieve the symptoms and distress caused by serious illness and to improve the quality of life of patients and their families. Unlike hospice care, which focuses on the last six months of life, palliative care can continue for as long as necessary and is often provided alongside curative care. 

Many patients can benefit from palliative care, especially if it is instituted early in their disease course. It is particularly beneficial for persons living with chronic, life-limiting illnesses such as cancer, heart disease, chronic kidney disease or chronic obstructive pulmonary disease (also known as emphysema or chronic bronchitis.) The comprehensive approach offered by palliative care teams helps ensure that the physical, emotional, psychosocial and financial concerns of patients and their families are appropriately addressed, which can greatly enhance quality of life. Importantly, palliative care can be provided alongside curative care. So, for example, a person with cancer can continue chemotherapy treatments aimed at curing their disease while also receiving palliative care. 

The Palliative Care Team 

Palliative care is a multidisciplinary approach to managing a person’s illness. For this reason, the palliative care team typically consists of a palliative care doctor, nurses, social workers, nutritionists, physical and occupational therapists and chaplains. Depending on the individual patient’s needs, the team may provide some or all of the following:

• Treating physical pain and discomfort 
• Providing physical and occupational therapy
• Offering mental health services to treat anxiety, depression and emotional distress
• Assisting with safety and mobility equipment such as wheelchairs, walkers, or a hospital bed
• Providing spiritual counseling
• Helping the patient and family identify goals of care based on their values and preferences
• Identifying financial resources as needed

Additionally, many palliative care programs offer complementary therapies such as massage, music therapy, art therapy, yoga, stress management and diagnosis-related support groups. 

Where Does Palliative Care Happen?

As of this writing, most palliative care in the U.S. is provided in the hospital setting. However, some hospitals are expanding their palliative care services to include patients who are being treated in outpatient clinics while living at home. Additionally, in some rural areas not serviced by a large hospital or clinic, telehealth services have allowed greater access to palliative care. 

What Is Hospice Care?

Similar to palliative care, hospice care is specialized care that focuses on alleviating suffering and improving quality of life for people living with a life-limiting illness. However, unlike palliative care, hospice is reserved for those who are expected to die from their disease within 6 months. Additionally, unlike palliative care, hospice care focuses only on comfort and symptom control, so patients must give up curative measures when they enter hospice care. They may, however, continue to take medications and receive treatment for other underlying conditions such as high blood pressure or mental health conditions such as depression and anxiety. 

Hospice care can encompass many different treatment modalities. However, in general, hospice providers offer the following products and services:

• A multidisciplinary care team consisting of a hospice physician and specialist physicians as needed (for example, a pain specialist or neurologist), a registered nurse, a medical social worker, home health aides and a chaplain or spiritual advisor
• Medications to alleviate symptoms such as pain, anxiety, nausea and constipation 
• Medical equipment such as a hospital bed or wheelchair and supplies like oxygen, catheters, bandages, splints, etc.
• Physical, speech, and occupational therapy as indicated
• Nutritional counseling
• Respite care to allow family caregivers to take a break
• Short-term inpatient care as needed
• Bereavement counseling
• Any other Medicare covered service that the hospice team or physician believe is necessary to maintain patient comfort, safety and quality of life

Importantly, hospice does not provide nor does hospice pay for medications and treatments aimed at curing the patient’s disease or addressing a condition not related to their terminal diagnosis. For example, if a person with end-stage cancer is receiving hospice care, his personal physician will be responsible for ordering medications that treat other unrelated conditions, such as high blood pressure or heart failure.. Additionally, the Medicare hospice benefit will not cover the cost of these medications, although Medicare Part D should. 

Additionally, if a family member calls 9-1-1 or takes the patient to the emergency room without arranging it through the hospice provider, the cost of the ER visit will typically not be covered by Medicare. So it is very important that families arrange all care through their hospice nurse. 

Where is Hospice Care Provided?

The vast majority of patients in hospice receive care in the home. After being evaluated by a physician and approved for hospice enrollment, a hospice nurse visits the patient and their caregivers in the home, performs an initial assessment and develops a plan of care. Depending on the severity of the patient’s symptoms, hospice staff will typically visit for about 30 minutes one to three times a week. The hospice provider also arranges for supplies necessary to meet the patient’s needs to be delivered to the home. 

When a person in hospice becomes acutely ill or injured, they may be transferred to a hospital or inpatient hospice facility for some time. However, these inpatient stays are usually quite short, since the goal of hospice is to minimize invasive treatments and allow the person to die a natural death. Inpatient hospice may also be offered when family caregivers are exhausted and in need of a break from the demands of caring for a dying loved one at home. This “respite care” can be provided in an inpatient hospice or, more often, an assisted living facility or nursing home. 

How Many Patients Receive Palliative Care and Hospice? 

Although patients continue to have difficulty accessing palliative care in some parts of the U.S., hospice is firmly entrenched in the American health care landscape, with over 1.7 million Medicare beneficiaries under hospice care in 2021, And, according to a recent report from the National Hospice and Palliative Care Organization, the number of beneficiaries who died while receiving hospice care was nearly 50% in 2021. 

With that being said, over 50% of Medicare beneficiaries receive hospice care for 17 days or fewer days, and 25% receive care for 5 days or less. Thus, while hospice utilization is definitely on the rise, many patients and families are still not receiving the full benefit of what’s available to them. The reasons for hospice underutilization are complex, and include difficulty in determining an accurate prognosis for patients with a life limiting illness, and financial penalties imposed by Medicare against hospice providers whose patients outlive their expected length of stay. In the face of both of these obstacles, doctors are reluctant to refer patients to hospice “too soon,” which causes patients to miss out on the full range of services available to them. 

Who Receives Hospice Care?

According to the National Hospice and Palliative Care Organization’s 2023 report, as of 2021, two groups of patients accounted for the largest percentage of patients in hospice in the U.S.  patients with cancer and those with Alzheimer’s disease and dementia (24% each) This was followed by patients living with:

• Heart disease and heart failure
• Respiratory disease
• Chronic obstructive pulmonary disease

Not surprisingly, about 75% of hospice patients are over the age of 65, and over 60% were over 85 years old. 

From a demographic perspective, non-Hispanic white Americans continue to make up the vast majority (about 83%) of patients receiving hospice care. Black, Hispanic, Asian and Native American patients receive only a tiny fraction — 17.5% collectively — of all hospice services provided in the U.S. Additionally, females are slightly more likely (58% versus 42%) to be cared for in hospice than males. 

Conclusion

In summary, hospice and palliative care are essential services provided to people living with serious, life-limiting illnesses and their families. Hospice care is specifically limited to those patients who have an expected life-span of six months or fewer, while palliative care is, in theory, available to anyone who has been diagnosed with a serious illness, regardless of their prognosis. However, as of this writing, palliative care is less accessible overall, especially to those who live in rural areas and certain geographic regions of the U.S.

Sources

What Are Palliative Care and Hospice Care : Active Dying. National Institute on Aging.

https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care

Frequently Asked Questions About Hospice Care. National Institute on Aging. https://www.nia.nih.gov/health/hospice-and-palliative-care/frequently-asked-questions-about-hospice-care# 

Hospice Facts and Figures. National Hospice and Palliative Care Organization.

https://www.nhpco.org/hospice-care-overview/hospice-facts-figures

Fine, Perry G. “Hospice Underutilization in the U.S.: The Misalignment of Regulatory Policy and Clinical Reality.” Journal of Pain and Symptom Management vol. 56,5 (2018): 808-815. 10.1016/j.jpainsymman.2018.08.005

A functional assessment staging tool, or FAST Scale, is used to identify functional abilities of those with Alzheimer’s or types of dementia.

Items are scored based on clinical analysis or information obtained from a knowledgeable informant and include:

• Subjective work difficulties
• Decreased ability to perform complex tasks (dinner planning, paying bills, etc)
• Improperly putting on clothing without assistance or prompting
• Unable to bathe frequently or properly without assistance
• Urinary and/or fecal incontinence
• Unable to speak more than a half-dozen intelligible words or fewer in the course of one day
• Limited ambulatory ability (cannot walk without personal assistance)
• Cannot sit up without assistance
• Loss of ability to hold up head without assistance or prop

Aside from this score, other dementia-related eligibility criteria, like the presence of co-morbid disease or secondary conditions, are considered in whether hospice is warranted.   

While some patients with end-stage dementia steadily decline and receive benefits indefinitely, others who do not meet criteria at the prescribed 30, 60, or 90 day intervals are often discharged from hospice. This is due in part to a policy implemented in 2014 by the Center for Medicare and Medicaid Services that decreased Medicare reimbursement for patients who are in hospice for greater than 60 days. Unfortunately, the patient population that accounts for the most lengthy hospice stays is those with some form of dementia, so these patients are more likely to be discharged while alive. According to research published in the Journal of American Geriatrics Society, nearly 40% of dementia patients in hospice in 2019 were discharged while alive. This is possibly due to improvement in the patients’ functional abilities, but may also reflect the reluctance of hospice providers to continue caring for patients once reimbursement declines. 

Sources

“Functional Assessment Staging Tool (FAST Scale) for Dementia”. Compassus. https://www.compassus.com/healthcare-professionals/determining-eligibility/functional-assessment-staging-tool-fast-scale-for-dementia/ 

“Survival in hospice patients with dementia: the effect of home hospice and nurse visits”. Journal of American Geriatrics Society. https://pmc.ncbi.nlm.nih.gov/articles/PMC8192457/

As long as recertification requirements continue to be met, there is no set time limit for how long someone can receive hospice benefits. This means, for example, that if patients with late-stage dementia outlive their 6-month life expectancy confirmed upon admission, hospice will still provide ongoing care if clinical decline is continually confirmed. Patients with other terminal diagnoses can remain on hospice for a period of more than 6 months as long as the hospice medical director or another hospice physician certifies that they are terminally ill. After the initial six-month admission, the doctor must recertify the patient’s status every 60 days. 

Dementia is one of the top four primary diagnoses for hospice patients (others include cancer, heart disease, and lung disease). However, Alzheimer’s disease and other forms of dementia have become the largest group of principal diagnoses for hospice patients since 2002 according to the National Hospice and Palliative Care Organization. More than half of all hospice recipients have some form of dementia.

Unlike patients with cancer or other end-stage diseases, gauging life expectancy for those with dementia can be quite difficult. NHPCO reports the average hospice enrollee received benefits for an average of 92.6 days in 2019. Patients with cancer were in hospice only an average of 45 days while those with dementia averaged 126 days.

Sources
“Certification and Recertification”. National Alliance for Care at Home. https://allianceforcareathome.org/regulatory-compliance/certification-and-recertification/ 

“10 Signs Death Is Near When a Person Has Dementia”. VeryWell Health. https://www.verywellhealth.com/what-is-it-like-to-die-of-dementia-1132331 

“Hospice care”. Medicare. https://www.medicare.gov/coverage/hospice-care 

“Hospice Regulations May Be Adversely Affecting Dementia Patients”. Hospice News. https://hospicenews.com/2022/05/27/hospice-regulations-may-be-adversely-affecting-dementia-patients/

At first glance, it might appear that the difference between for-profit and non-profit hospice providers is merely the way they structure their businesses. That is, for-profit entities gear their business activities towards generating income for owners and investors, while nonprofits use the business proceeds to fund programs and services. The principals and employees of a nonprofit are paid a salary, but they don’t share in the profits the business earns. Additionally, for-profit entities are usually funded by private entities such as banks, venture capitalists and private equity firms who expect to see a return on their investments. Nonprofits are funded by donations or endowments. While they need to remain financially solvent, the pressure to generate revenue is far less.

The difference between these two business models inevitably impacts how the business is run. In the hospice industry, this generally means that for-profit hospice providers focus more on optimizing revenue than other aspects of care. For example, for-profit hospices enroll a higher percentage of patients with dementia — a population that, in general, has a longer illness trajectory and fewer acute care needs than people with illnesses such as cancer and chronic obstructive pulmonary disease. These patients cost less to care for and stay in hospice longer than most other populations. And because Medicare reimburses hospices at a fixed per-diem rate, they generate more revenue than patients who are seriously ill and near death. 

For-profit hospices also tend to fall short in caring for patients in the last days of life.  

According to a 2019 report from the U.S. Government Accountability Office, out of all hospice providers surveyed, 83 failed to provide a patient visit by hospice staff (such as a doctor or RN) during the last three days of life. Of these providers, 80 were for-profit while only three were not. 

Another stark difference between for-profit and nonprofit hospice providers is the number of patients discharged while still alive. According to the GAO report, significantly more for-profit hospices discharged 50% or more of their patients prior to death than nonprofits (out of 472 hospices that fell into this category, 462 were for-profit entities). This disparity could indicate higher levels of patient dissatisfaction with the care provided by for-profit providers. Or it could mean that for-profit providers are accepting patients who actually don’t qualify for hospice because they have more than six months to live. Even more disturbing is the possibility that patients are being forced out of hospice when they are close to death, as their care needs become more acute and cost the hospice more to provide. 

Lastly, for-profit hospices tend to enroll a high percentage of patients who reside in nursing homes. This, too, allows the for-profit agencies to provide less direct hands-on care, since nursing homes typically have full-time staff that can attend to many of a hospice patient’s needs. 

With all that being said, some for-profit hospice programs provide excellent care, while some nonprofits fall short. That’s why it’s so important to do your homework and find a provider that will meet your needs. 

Sources

“Hospice Care”. VeryWell Health. https://www.verywellhealth.com/hospice-care-overview-4581951 

“Medicare Hospice Care: Opportunities Exist to Strengthen CMS Oversight of Hospice Providers”. United States Government Accountability Office. https://src.bna.com/MQG?_ga=2.70655702.737881090.1574109848-61404479.1574109848

We encourage you to download and print out a list of these questions for each provider you will be interviewing. (We suggest you narrow it down to no more than three hospice providers by reviewing star ratings and other factors before you proceed. )Then note their answers in the space provided below each one. You can download a printable copy of the questions by clicking the button below. 

As with all choices in life, the best way to make a good decision is to do your homework and learn all you can about the options available to you. As a starting point, ask your primary care provider or treating specialist if they have experience with any of the hospice providers on your list. Most doctors are more than willing to give patients their opinion about which hospice might be the best fit for them. You may also want to speak with friends and family. Perhaps someone you know has had experience with hospice and can give you their perspective on what was most important to them. 

The next step is a crucial one: Interview all the hospice providers on your list, in person if possible, to get answers to the questions that are most important to you. Set up the appointment in advance, and arrive armed with a list of things you want to know more about. According to the Hospice Foundation of America, here are some of the questions you should ask:

General Services

1. Is your agency Medicare-certified?
2. Is your agency for-profit or nonprofit?
3. How long has your hospice been serving patients?
4. Is your agency faith-based, or do you provide spiritual care?
5. Do you have an inpatient facility if symptoms cannot be managed at home? If not, do you provide
   continuous care?

Response Times

1. How quickly will the hospice respond if the plan of care is not effectively controlling symptoms? What is the typical response (e.g., home visit, phone guidance, prescription adjustment)?
2. How quickly will the hospice respond in an emergency?
3. What is the typical response time for after-hours calls (evenings, nights, weekends, and holidays)?
4. Will the hospice treat related conditions, such as urinary tract infections, or will the patient need care elsewhere?
5. How soon can we expect symptoms such as pain, anxiety, or shortness of breath to be controlled?

Hospice Staff & Volunteers

1. How quickly will a plan of care be developed?
2. Which staff members and volunteers will visit, and how long will visits typically last? (Note: Some families prefer more privacy and fewer staff visits—if so, discuss this.)
3. Will the same nurse provide ongoing visits?
4. Do hospice staff members have specialized training or certifications in hospice or palliative care?
5. How many patients are assigned to each hospice nurse? (Nurse Julie recommends no more than 12–15 patients: hospicenursejulie.com.)

Medications and Supplies

1. Does your agency provide a hospital bed?
2. What medical supplies does hospice provide?
3. What supplies and/or medications, if any, will we need to obtain ourselves?
4. Does hospice deliver medications, or will we need to pick them up? If pickup is required, where?
5. Can I continue taking my current medications?
6. Do you provide medical cannabis to hospice patients in states where it is legal?

Family Involvement and Respite Care

1. What care are family members expected to provide?
2. How does your agency train and keep family members informed about the patient’s condition?
3. How will family members be educated about what to expect as the illness progresses?
4. Will hospice staff provide training and ongoing guidance to family caregivers?
5. Does the hospice provide respite care for family caregivers? How often, and how is it arranged?
6. If inpatient care becomes necessary, how will the hospice manage that transition?
7. Does the hospice provide bereavement support? If so, how is it provided and by whom?

Quality of Care

1. How do you balance a patient’s choice to go—or not go—to the hospital if needed?
2. Does the hospice report quality data to the Centers for Medicare & Medicaid Services (CMS) Hospice Compare program? Is the hospice accredited by the Joint Commission or the Community Health Accreditation Program (CHAP)?
3. If we are unhappy with some aspect of care, how do we contact an administrator? Who specifically should we call?
4. How do you coordinate care with my doctor if I choose to continue seeing them? (Federal law allows this while on hospice.)

Length of Care

1. How long can my loved one remain in hospice care?
2. Are patients ever discharged from hospice while still alive? Under what circumstances might that occur? (SevenPonds flags this as an important question, as it may raise ethical concerns—particularly if a patient is discharged close to death due to the financial burden of care not covered by Medicare.)

Costs

1. Excluding required co-pays, are there any hospice-related costs not covered by Medicare?
2. Will the agency accept my insurance?
3. How does the agency handle billing and payments?

Patient/Caregiver Satisfaction

1. Do you participate in the Medicare Family Caregiver Experience Survey? If so, how can we access the survey to provide feedback?
2. If you do not participate in the Medicare survey, how can we submit feedback or concerns?

This list is provided to you at no charge by Sevenponds.com. If you found this helpful, we encourage you to visit us at SevenPonds.com where we offer information, education and advice about all of your end of life needs. Please feel free to share this with anyone you know who may find it useful.

We always love hearing from our readers and welcome any feedback at wecare@sevenponds.com.

© 2026 SevenPonds. For personal, non-commercial use only.

Sources
“How to choose a hospice provider”. Hospice Foundation of America. https://hospicefoundation.org/how-to-choose-a-hospice-provider/ 

“About Us”. Community Health Accreditation Partner. https://chapinc.org/ 

Pediatric palliative and hospice care is a model of care that focuses on enhancing the quality of life for infants, children, adolescents and young adults living with a life-limiting illness and their families. The goals of care are similar to those for adults: preventing or alleviating suffering (both physical and psychological), maximizing function and minimizing distress. Unlike adults, however, children may receive both palliative and hospice care alongside therapies aimed at curing their disease. 

Typically, the pediatric palliative care team is made up of a physician who specializes in both pediatrics and palliative care, one or more nurses, a social worker, and a chaplain. The team may also include other support staff, such as an occupational, speech and/or physical therapist. Many hospitals also offer resource counselors who help the family sort through the logistical and financial challenges of caring for a child with a serious illness. 

Large hospitals and those that specialize in the care of children and adolescents may also have a child-life specialist on the pediatric palliative care team. These specially trained professionals are skilled at engaging children in age-appropriate activities that can help them understand and cope with treatments and reduce their anxiety, pain and distress. A child-life therapist may also offer the child developmentally appropriate ways to express difficult emotions through play therapy. 

Caring for the Family as a Whole

Although all care models encompass both the ill person and their family system, pediatric palliative care teams are particularly attuned to the needs of the child’s parents, grandparents, siblings and extended family. The stressors faced by the parents of a seriously ill child are enormous. Not only must they deal with the reality of their child’s suffering and possible death,  they often feel responsible for their child’s illness and are plagued by feelings of guilt and shame. Many families also face financial hardship due to mounting medical bills and loss of income if one parent has to leave the workforce to care for the sick child. 

At the same time, grandparents may be called upon to care for a family’s other children, whether they have the resources to do so or not. Meanwhile, siblings often suffer quietly in the background, struggling with feelings of guilt, shame, fear and abandonment. These children often suffer life-long consequences, such as chronic depression, difficult interpersonal relationships, anxiety and post-traumatic stress. 

The overarching fear of losing the child forever colors all of the family’s actions and interactions when a child is seriously ill. The pediatric palliative care team works with both the individual family members and the family as a whole to minimize distress and give them the support and guidance they need. In some cases, parents and siblings may be referred to a psychotherapist or play therapist for individual counseling. They may also be invited to join support groups, which exist for both parents and siblings as well as the patients themselves. As the child becomes sicker and death appears imminent, spiritual counselors may also help the family engage in meaning-making activities and end-of-life rituals that offer comfort as the child’s life comes to an end. Pediatric hospice also offers ongoing bereavement care. 

Sources

“Pediatric Concurrent Care”. National Alliance for Care at Home. https://allianceforcareathome.org/wp-content/uploads/Continuum_Briefing.pdf 

“Play Therapy in Medical Settings”.  Handbook of Play Therapy. https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119140467.ch24 

“Evaluation of quality of life of healthy siblings of children with chronic disease”. Turkish Archives of Pediatrics. https://pmc.ncbi.nlm.nih.gov/articles/PMC6408193/ 

“Bereavement Care”. CaringInfo. https://www.caringinfo.org/types-of-care/bereavement-care/ 

Medicare ranks hospice providers based on a number of quality measures, including a star-rating system based on responses from caregivers to the family caregiver experience survey. Also known as the Consumer Assessment of Healthcare Providers and Systems Hospice survey, it measures the quality of care in six different domains, including:

• Communication with family caregivers
• Timeliness of help
• Respect for the patient
• Emotional and spiritual support
• Treatment of pain
• Family/caregiver training

Additionally, the survey measures two global dimensions of care, the family’s overall rating of the hospice and their willingness to recommend the hospice to others. 

Medicare aggregates the responses of family caregivers for each participating hospice and provides the results on Care Compare, a service offered by the U.S. Centers for Medicare and Medicaid Services that provides information on hospice providers, hospitals, nursing homes, home health agencies and other health care providers located throughout the United States. The website provides general information, such as the type of facility, the location, how many patients the hospice serves on average per day and how long the hospice has been providing care. It also indicates whether the hospice is a for-profit or non-profit entity and ranks each participating hospice on quality measures set by CMS. The site does not, however, have information on every hospice provider currently operating in the U.S. 

To use Hospice Compare, go to Medicare.gov/Care Compare, then:

• Select Hospice from the menu on the left, then enter your ZIP code in the box marked My Location, and click Search. (If you want to look at a specific provider you may enter the name on this page as well.) A list of providers in your area should appear. 
• To compare providers side-by-side, click the box labeled “Compare” next to each provider you would like to include. When you have selected all the providers you want to see, click the white box labeled “Compare” at the top right of the page. 
• A new page will open. At the top will be the name and phone numbers of the selected providers and the type of organization (nonprofit or for-profit). Below this will be a side-by-side comparison of the providers, starting with the date each agency was certified by Medicare. 
• Next, choose one or more of the categories listed to compare the agencies side by side. The categories should be:
  • Conditions Treated— lists the most common conditions treated by the provider by percentage and compares them to the national average. 
  • Location of care — e.g. home, nursing home, assisted living, inpatient hospital, inpatient hospice or others
  • Level of care provided — e.g. routine home care only or routine home care plus at least one additional level of care 
  • Family caregiver experience — quality measures collected by Medicare, including the following:
    • Communicating with family
    • Getting timely help
    • Treating patient with respect
    • Providing emotional and spiritual support
    • Training family to care for patient
    • Help for pain and symptoms
    • Overall rating of hospice
    • Would recommend

Next to each parameter is a percentage, which is based on results from a national survey that asked family members about their experience with the hospice. To the right of that result is the national average score. 

• Quality of care — this includes two measures shown as percentages:
  • Percentage of patients getting at least one visit from a registered nurse, physician, nurse practitioner, or physician assistant in the last three days of life
  • Patients who were assessed on all 7 HIS quality measures at the beginning of hospice care to meet the HIS Comprehensive Assessment Measure requirements:
    • Preferences for hospitalization and/or resuscitation
    • A discussion of values and beliefs
    • Initial pain assessment
    • Timely additional pain assessments if pain is identified as a problem
    • Assessment for shortness of breath on admission
    • Timely treatment for shortness of breath
    • Treatment for constipation in patients taking opioids for pain

Using the tool can be a bit time-consuming and tedious. However, it can provide you with a very helpful window into the hospice providers in your area and the type and quality of care they provide. 

Sources

“CAHPS® Hospice Survey”. Centers for Medicare & Medicaid Services. https://www.cms.gov/medicare/quality/hospice/cahpsr-hospice-survey 

“Medicare Care Compare”. Medicare.gov. https://www.medicare.gov/care-compare/ 

Based on personal experience, our Founder Suzette Sherman at SevenPonds recommends the Medicare.gov Hospice Compare website to select a hospice provider. Family members are allowed to select any hospice they choose and need not use the one recommended by their GP. This website not only offers the profit or nonprofit status of each hospice but also a star ranking based on reviews of family members. These rankings are based on questionnaires filled out by family members at the end of their experience. 

Keep in mind, it is best not to search for a hospice at the last minute since they are not always able to take new patients. You may have to contact several different hospices before finding options with open availability. Additionally, not all of the providers shown on the website may cover your area. SevenPonds recommends you interview at least two potential hospices prior to making a decision, and we provide a downloadable list of questions to ask while interviewing the agency. All hospice agencies will send a representative to your home location to introduce themselves and provide you with information about their agency.

In most cases, patients and families can obtain a list of licensed hospice programs in their area through their primary care physician or treating specialist. If the patient is hospitalized, the hospital discharge planner and/or case worker will also assist the family in finding a program that will fit their needs. The patient and their family will ultimately make the final decision, but these professionals are usually quite knowledgeable about the quality of care and level of service provided by hospice providers in their geographical area. If your doctor or hospital doesn’t provide you with a list of nearby hospice programs, you can reach out to your State Hospice Association for assistance. 

In addition to state agencies, there are a number of national organizations that help patients and families navigate the system and arrange hospice care. The following organizations offer online databases that allow clients to search for hospice programs by name, location and/or zip code.

• The National Hospice and Palliative Care Organization
• National Hospice Locator 
• National Association for Home Care and Hospice
• Medicare.gov/Hospice Compare 

The American Cancer Society is also available to help patients in some areas locate hospice care. To learn more, call 1-800-227-2345 or search for available resources online.

Keep in mind, too, that all hospice programs are not alike. Although Medicare and Medicaid require all licensed hospice providers to offer the same levels of care, the quality of care can vary greatly depending on staffing levels, staff training and the availability of volunteers. Choosing the best provider means doing your homework and finding out as much about each program as you can. At minimum, any program you consider should be certified by Medicare and licensed by the state. But there are many other issues to consider as well. 

Sources 

“ACS Patient Programs and Services”. American Cancer Society. https://www.cancer.org/support-programs-and-services.html 

“Hospice Analytics”. National Hospice Locator. https://www.nationalhospicelocator.com/ 

“Find a Provider”. National Alliance for Care at Home. https://allianceforcareathome.org/find-a-provider/ 

“Hospice Care and Compare”. Medicare.gov. https://www.medicare.gov/care-compare/compare?providerType=Hospice&providerIds=261557,261623,261559&city=Kirksville&state=MO&zipcode=63501

Palliative care is typically covered by health insurance, although some individuals may need to work with financial assistance programs or other alternatives if they are uninsured and unable to afford the cost of care. When palliative care is covered by insurance, the extent of coverage generally varies based on a number of factors outlined in the insurance policy. Medicaid and Medicare also cover palliative care for patients if the visits are attended by an advanced practice nurse or physician. 

While health insurance covers palliative care, that coverage may have limitations. These limitations can include which services are covered, how much of the cost is covered, and where services can be performed. There may also be limitations on coverage for treatments and medications. Since palliative care teams are typically interdisciplinary, applicable coverage may depend on who provided the service. Some insurance plans don’t include coverage for palliative care at all, so it is important to review your plan carefully and contact the insurer with any questions or concerns. 

For individuals who do not have insurance coverage or need additional financial support, alternative arrangements often need to be made. This can mean seeking help from a financial assistance program or a charity, fundraising, or contacting foundations and nonprofit organizations for grants and similar funding. Some individuals use savings or retirement funds to pay for palliative care, but these funds can be quickly exhausted as more treatments or interventions become necessary.

Although who pays for palliative care can depend on a number of factors, such as insurance coverage and financial circumstances, there are usually resources available to ensure patients and their families are able to access necessary care. It is incredibly important for individuals to explore their options and plan how they will finance their care long before it is actually needed. Additionally, ongoing communication with healthcare providers, palliative care teams, and social workers can be paramount in ensuring that financial concerns are addressed promptly when the need for palliative care is imminent. 

Sources

“How to Pay for Palliative Care with Medicare or Private Insurance”. VITAS Healthcare. https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/who-pays-for-palliative-care 

“Who Pays for Palliative Care? Your Questions Answered”. A Place for Mom. https://www.aplaceformom.com/caregiver-resources/articles/insurance-covers-palliative-care

According to the National Hospice and Palliative Care Organization, hospice is an optional Medicaid benefit under state Medicaid plans. At this time, benefits are, by law, closely matched with those provided by Medicare. However, due to policy decisions on the national level, many states are now scrutinizing how Medicaid dollars are spent. Thus, Medicaid hospice benefits may or may not be available where you live. Visit this page from the Kaiser Family Foundation to learn more about what’s available in your state. 

Remember, too, that many disabled persons and people over the age of 65 are eligible for both Medicare and Medicaid (“dual-eligible”). When this is the case, and a person on hospice resides in a nursing home, Medicaid typically pays the cost of room and board, while Medicare pays for hospice care. In other situations, Medicaid may pay for some or all of the copayments for medication or respite care. 

If your state offers a Medicaid hospice benefit, the eligibility requirements are the same as those for Medicare. That is, you must sign a statement agreeing to forego curative treatment for your underlying disease or related condition (unless you or the patient are under 21) and a physician must certify that you are terminally ill and have six months or fewer to live. 

Both Medicare and Medicaid cover hospice services at a fixed per-diem rate based on the level of care provided and where it takes place. The designated reimbursement categories are as follows:

• Routine Home Care (RHC) — care provided by members of the hospice team. The reimbursement for RHC is higher for days 1–60 and decreases from day 61 on. 
• Continuous Home Care (CHC) — care provided during a crisis, usually by a nurse
• Inpatient Respite Care (IRC) — care provided in a hospital or nursing home to give family caregivers short-term relief
• General Inpatient Care (GIC) — care in a hospital for relief of pain or other symptoms that cannot be controlled in another setting
• Service Intensity Add-on — a higher level of care provided during the last seven days of life. The care must be provided by a registered nurse or a social worker who visits the patient or family in their home. 

Reimbursement rates for hospice care change annually. They are published by the Centers for Medicare and Medicaid Services in September and go into effect Oct. 1 for the following fiscal year. To learn more about hospice reimbursement rates for 2025, see this document from CMS. 

Sources

“Fiscal Year (FY) 2025 Hospice Payment Rate Update Final Rule (CMS-1810-F)”. Centers for Medicare & Medicaid Services. https://www.cms.gov/newsroom/fact-sheets/fiscal-year-fy-2025-hospice-payment-rate-update-final-rule-cms-1810-f 

“Hospice Benefits”. Centers for Medicare & Medicaid Services. https://www.medicaid.gov/medicaid/benefits/hospice-benefits 

“Medicaid Benefits: Hospice Care”. KFF. https://www.kff.org/medicaid/state-indicator/hospice-care/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22desc%22%7D

According to Vitas Healthcare, Medicare pays for 100% of hospice care provided in the U.S. Most private insurers and HMOs also offer a hospice benefit, but may not offer the same level of service that Medicare and Medicaid provide. If you do not have insurance and are not eligible for Medicaid or Medicare, you will need to pay for hospice yourself. This is very unusual, however, since almost everyone who has a terminal illness will qualify for either Medicare, Medicaid or both.

Medicare is required to pay for all necessary services for terminally ill patients who are eligible for Medicare Part A (the Medicare hospital benefit), including hospice care. This is true even if the patient is enrolled in a Medicare Advantage Plan (Medicare Part C). However, before a person can be enrolled in hospice, the following conditions must be met:

• A doctor and the hospice medical director must certify that the person is terminally ill and has six months or fewer to live.
• The person or their legal guardian must sign a statement choosing hospice care instead of other Medicare-covered services to treat the terminal illness (for example, cancer chemotherapy or other curative care). (Note: This does not apply to beneficiaries who are under 21 years old.)
• Care must be provided by a Medicare-approved hospice provider.

As a general rule, Medicare will pay all of the costs for the following services as long as they are deemed medically necessary by the patient’s physician or hospice team, according to Medicare.gov:

• Doctor services
• Nursing care
• Medical equipment (like wheelchairs or walkers)
• Medical supplies (like bandages and catheters)
• Prescription drugs for symptom control or pain relief (a small copayment of no more than $5 may be required)
• Hospice aide and homemaker services
• Physical therapy 
• Occupational therapy 
• Speech-language pathology 
• Social work services
• Dietary counseling
• Grief and loss counseling for you and your family
• Short-term inpatient care (for pain and symptom management)
• Short-term respite care in a hospital or nursing home so a family caregiver can take a break (you may need to pay 5% of the Medicare approved amount for this stay)
• Any other Medicare-covered services needed to manage your pain and other symptoms related to your terminal illness and related conditions

With few exceptions, Medicare does not cover care aimed at curing a patient’s underlying illness (for example, chemotherapy for cancer) once they are enrolled in hospice. Additionally, it will not cover services from a hospice provider other than the hospice in which the patient is enrolled. It will, however, cover medical care provided by the patient’s primary care physician if that is the practitioner the person chooses to supervise their care. 

Sources

“How to Pay for Hospice Care (Medicare and Other Options)”. VITAS Healthcare. https://www.vitas.com/hospice-and-palliative-care-basics/paying-for-hospice/who-pays-for-hospice/

Patients may be discharged from hospice, also known as a live discharge, if their healthcare provider estimates that they will live longer than six months. This may happen if the patient’s health improves while on hospice, leading their healthcare provider to re-evaluate their prognosis and adjust their life expectancy. 

Other common reasons why patients may be discharged from hospice include:

• Transferring hospice services
• Unplanned hospitalization 
• Seeking curative treatment for terminal conditions 

Additionally, patients can choose to discontinue hospice care at any time.

It is important to note that being discharged from hospice does not prevent the patient from entering hospice again if their health deteriorates in the future. However, recent studies have shown that when live discharges from hospice occur, almost half of the patients die within 6 months. In these instances, some experts argue that it would be more appropriate for these patients to continue receiving hospice care rather than being discharged and then admitted to the hospital shortly afterward. 

Additionally, a 2017 study found that hospices with higher live discharge rates often have higher profits. This has prompted The Centers for Medicare & Medicaid Services to question whether some patients are being admitted to hospice before they qualify in order to increase the hospice provider’s bottom line. On the other hand, CMS is also concerned about the impact of live discharges and the concomitant loss of supportive services on patient quality of life and death.

Ultimately, it is possible for patients to be discharged from hospice while they are still alive, and these live discharges sometimes have the potential to raise multifaceted issues surrounding financial, ethical, and patient care concerns. Live discharge rates vary among hospices and typically rely on the decisions of healthcare providers, not the request of the patients themselves. More substantial oversight will be necessary to ensure that appropriate and ethical care will continue to be upheld in end-of-life scenarios. 

Sources

“What Happens if I Get Better While in Hospice Care?” VITAS. https://www.vitas.com/hospice-and-palliative-care-basics/about-hospice-care/what-happens-if-i-get-better-while-in-hospice-care

“Nearly 1 in 5 Hospice Patients Discharged While Still Alive”. NPR.  https://www.npr.org/sections/health-shots/2017/08/11/542607941/nearly-1-in-5-hospice-patients-discharged-while-still-alive

“Hospice Readmission, Hospitalization, and Hospital Death Among Patients Discharged Alive from Hospice”. JAMA Network Open. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2818752

Hospice can help prevent caregiver burnout in a number of ways. Although most of the day- to-day physical needs of a person receiving hospice care are attended to by family caregivers, hospice staff can offer advice, emotional support, and much-needed respite care. If the caregiver is experiencing extreme distress, they may also provide a referral to a mental health professional who can help that person sort through their feelings and develop more robust coping skills. Hospice staff and volunteers are also well-versed in the kinds of stressors that family caregivers face, and can often suggest concrete ways to lessen the burden when the caregiver(s) feel overwhelmed. 

Caregiver burnout: What is it?

Thanks to advances in science and medicine, many people suffering from a terminal or life-limiting illness today live far longer than they would have even a few decades ago. Further, more and more people approaching the end of life are being cared for in their homes. According to data from the Centers for Disease Control and Prevention, between 2000 and 2018,, the percentage of people who died in hospitals fell from 48% to 35%, while the percentage of people who died in their own homes rose from 22.7% to 31.4%. And while some of those home deaths undoubtedly occurred suddenly, about 7 in 10 are attributable to chronic diseases, according to the CDC. 

What this means from a practical standpoint is that illness trajectories are longer, and fewer sick patients are being cared for in hospitals than any time in the recent past. As a result, more and more family members find themselves in the position of caring for a spouse, sibling or aging parent in their home over many months and even years. This can lead to many different levels of stress and distress, from financial challenges (for example, if someone had to quit their job to take care of the loved one) to exhaustion, anxiety, depression and poor physical health. Eventually, the caregiver may develop feelings of anger and resentment towards the person needing care — challenging emotions that may lead to feelings of guilt and shame. Many family caregivers develop poor eating habits, sleep irregularly and lose contact with other family members and friends. Isolated and overwhelmed, they may eventually descend into the state of physical, emotional and mental exhaustion known as caregiver burnout, which is characterized by anxiety, depression, hopelessness and compassion fatigue. In some extreme cases, a burnt out caregiver may actually neglect or actively harm to the person they have been caring for.

Specific ways in which hospice can help

Caregiver burnout is a sign that a family caregiver is handling more responsibility that they can reasonably manage given the physical, psychological and financial resources available to them. Strategies for preventing or alleviating burnout, therefore, are those that ease the burden of caregiving or increase the resources available to provide care. Hospice can assist with this in various ways, such as:

• Providing respite care so the caregiver can take time for themselves to attend social events, read a book or take a leisurely bath.
• Arranging for volunteers to take care of household chores such as doing laundry, grocery shopping, picking up dry cleaning or cooking a meal
• Ordering equipment and supplies that can make caregiving easier, such as a wheelchair, walker, hospital bed, bedside commode etc. 
• Providing telephone advice when circumstances change, such as when the patient needs more pain medication, sedation or a medication for nausea or vomiting
• Arranging inpatient care if the person who is sick needs emergency care
• Offering support and guidance in identifying resources in the family or community that can help with the person’s care. Oftentimes, family caregivers fail to ask for help because they believe they “should” be able to handle the responsibility of caring for their loved one alone. Hospice staff can help them frame their thinking differently and begin to involve others in the person’s care. 
• Connecting the caregiver to online support groups. The Alzheimer’s Association, for example, offers online support groups and a free online community message board where those caring for someone with dementia can reach out for support.
• Connecting the caregiver to potential sources of financial assistance, including government programs such as SNAP. They can also assist the caregiver in finding out if their state’s Medicaid program offers pay to family caregivers, and if the person who is ill qualifies for assistance through the Department of Veterans Affairs.

Sources

“About Us”. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). https://www.cdc.gov/nccdphp/about/?CDC_AAref_Val=https://www.cdc.gov/chronicdisease/center/index.htm 

“Caregiver Burnout”. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout 

“Are you experiencing compassion fatigue?” American Psychological Association. https://www.apa.org/topics/covid-19/compassion-fatigue 

“Support Groups”. Alzheimer’s Association. https://www.alz.org/help-support/community/support-groups 

Although the main goal of hospice is to ensure the comfort and well being of people approaching the end of life, it provides many benefits to families as well. Since the majority of hospice care happens in the home, family members ultimately become primary caregivers, managing the day to day needs of their loved one. Hospice becomes the support system designed to assist families through end of life care of the patient. Knowing that they are supported in keeping a loved one in the comfortable, safe, and loving environment of home can increase peace of mind for families. The benefits of a revolving team of specially trained staff, respite care, volunteers, and grief support services may also help families cope with their loved one’s end-of-life care and subsequently, their death.

Education is a cornerstone of the support caregivers will receive from the hospice team. Knowing what to expect and how to address issues that may crop up can empower families to feel more confident in their caregiving role. The case manager or primary nurse collaborates with families to develop a unique and tailored care plan best suited to the needs of the patient, and everyone in the home. This may include things like the best time of day to schedule weekly nursing visits and setting treatment goals.

Families may also receive hospice education on the following:

• Pain prevention and treatment
• Medication management
• Fall prevention
• Patient care; repositioning
• Wound care (if appropriate)

All medications and medical equipment are delivered to the home, relieving caregivers of the burden of leaving the home to get them. Families have access to hospice 24 hours a day for any questions or concerns. An on-call nurse will triage the patient’s acute symptoms via phone and instruct the caregiver on how to manage those accordingly. Every family is provided with a comfort kit (various medications used to treat pain, constipation, agitation, and shortness of breath) upon patient admission. This is so caregivers have whatever the patient may potentially need in a crisis on hand to bring immediate relief. A nurse will visit the following day to ensure patient comfort. However, the on-call nurse will come sooner if the family is unable to quell patient symptoms on their own. If a crisis cannot be averted, inpatient care may be warranted.

Other staff support can further ease family caregiver burdens. A certified home health aide will come to the home up to several times a week to assist the patient with things like bathing, grooming, dressing, feeding, and changing bed sheets. Social workers can provide families with additional resources including private home health aide companies for hire or referrals to ancillary providers such as podiatrists and hair stylists who will come to the home to provide services. They can also be instrumental in helping families complete financial, legal, or funeral paperwork that might otherwise feel too overwhelming.

Aside from easing stress caused by the physical demands of patient care, hospice staff can address mental and emotional needs for families, as well. Caring for a loved one while maintaining self-care may seem overwhelming at times. The social worker can request a volunteer to come sit with the patient, so caregivers can leave the home for a few hours for a much-needed break. Families can also request respite care. In these situations, patients may be transported to an inpatient or approved long-term care facility for up to 5 days, so families can attend special events or take a short vacation.

Chaplains, or spiritual counselors, are also part of the hospice team. They can provide guidance to both patients and families that is specific to religious beliefs or more non-denominational oriented if desired. Upon request, chaplains can also help to arrange for a priest to come to the home to perform the sacrament of the sick ceremony for the patient and pray with the family.

Bereavement support for families

After the patient dies, hospice benefits provide long-term grief and bereavement support for families for up to 13 months. This may include continued visits with the social worker or chaplain if the family is struggling to cope with the loss. Group and individual grief counseling may be offered virtually or in person. Some hospice providers also offer counseling specific for children who have lost a parent or other close family member. Referrals can be made to families that may need additional help in coping with the death of their loved one. 

Sources

“Bereavement Care”. CaringInfo. https://www.caringinfo.org/types-of-care/bereavement-care/ 

Many hospice providers offer complementary and alternative therapies for patients. However, there is very little current data that defines the scope or frequency of therapies administered for chronically ill or terminal patients. The 2007 National Home and Hospice Care Survey shows that more than 40% of hospice care providers in the U.S. offered some sort of complementary and alternative medicine. About one-quarter of patients received some form of therapy. Unfortunately, there are no statistics available to note whether this number has grown or lessened since then.

What therapies are available to patients?

Complementary and alternative therapies are provided by employees, contractors, or volunteers, who are trained or licensed to provide therapy (depending on state laws). Music therapy, Massage therapy and Biofield therapies, like Reiki or Healing Touch, are most commonly offered by hospice.

Additional therapies that a hospice may provide for patients include:

• Acupressure or acupuncture
• Aromatherapy
• Breathing Techniques
• Craniosacral therapy
• Guided imagery
• Hypnotherapy
• Meditation
• Mindfulness
• Pet Therapy
• Reflexology

Benefits of complementary and alternative therapies for hospice and palliative patients

A 2018 study shows a short-term benefit in symptom improvement for palliative patients whether therapies were performed separately or combined. While additional studies are needed to further examine the value of complementary and alternative medicine in a hospice or palliative setting, research from the National Library of Medicine in 2021 reveals positive outcomes for patients receiving integrated therapies at end of life.

Physical symptoms that most commonly show improvement include:

• Tiredness/Fatigue
• Dyspnea (shortness of breath)
• Nausea/Vomiting
• Poor Appetite
• Restlessness/Agitation

Positive psychosocial and spiritual outcomes include:

• Lessened anxiety or depression
• Feelings of inner peace and well-being
• Improved Quality of Life
• A sense of personal satisfaction

The future of complementary medicine in hospice and palliative care

As a result of increasing popularity and public demand, providers must continue to educate themselves on the benefits of therapies for patients. Medicare hospice benefits do not currently recognize integrative therapists as a required interdisciplinary team member, as they do physicians, nurses, aides, social workers, chaplains, and volunteer coordinators. Both profit and non-profit hospice companies must allot funds to pay for integrative therapies if they wish to offer these services to patients and families. 

Sources

“Complementary and Alternative Therapies in Hospice: The National Home and Hospice Care Survey: United States, 2007”. Centers for Disease Control and Prevention. https://www.cdc.gov/nchs/data/nhsr/nhsr033.pdf 

“Implementation and outcomes of complementary therapies in hospice care: an integrative review”. Palliative Care and Social Practice. https://pmc.ncbi.nlm.nih.gov/articles/PMC8552400/ 

“Complementary and Alternative Medicine in Hospice and Palliative Care: A Systematic Review”. Journal of Pain and Symptom Management. https://www.jpsmjournal.com/article/S0885-3924(18)30390-7/fulltext

Providing hospice and palliative care to people with intellectual disabilities poses a number of unique challenges. Although each person’s level of intellectual ability will vary, all individuals with intellectual disabilities have a diminished ability to understand information, a decreased ability to function independently and marked developmental delay. Many are nonverbal or have other barriers to communication, and a significant percentage also suffer from Autism Spectrum Disorder, or ASD. People with intellectual disabilities are also more likely to have comorbidities associated with their underlying diagnosis. For example, adults over the age of 60 with Down syndrome have a 40% higher incidence of Alzheimer’s disease than similarly aged healthy adults. They also have a higher incidence of cardiovascular disease and certain cancers. 

Other challenges to caring for people with intellectual disabilities, especially at the end of life, include:

• Poor or diminished insight, leading to decreased ability to share in decision-making
• Unusual communication patterns around expressing symptoms or distress
• Challenging family systems and social circumstances
• Behavioral and psychiatric problems

Studies have also shown that people with intellectual disabilities experience significant health inequities that lead to overall poorer health and earlier death. According to one study conducted by the National Health Service in England, men and women with intellectual disabilities had a life expectancy of 63 years and 65 years respectively. This was a full 16 years lower than the overall life expectancy in the country at the time.   

Despite this, people with intellectual disabilities are living longer lives. The life expectancy for people with Down Syndrome, for example, increased from 10 years in the 1940s to 47 years in 2007, according to the CDC.  As a result of this improvement, more people with intellectual disabilities are developing chronic life-limiting illnesses associated with aging. Many of these people will require. palliative and hospice care at the end of their lives. 

Caring for People with Intellectual Disabilities

Despite the unique challenges faced by people with intellectual disabilities, their needs when they are living with a life-limiting illness are the same as anyone else’s.. They include 

• Physical issues such as the management of pain and other distressing symptoms including nausea, vomiting, shortness of breath, mobility problems and fatigue.
• Psychosocial issues such as isolation, loneliness, fear of the unknown and the need to be seen, heard and understood by caregivers and the medical team
• Spiritual issues such as the need for comfort and a sense of meaning

Meeting these needs involves seeing each patient as an individual and learning about their unique ways of making their needs known. For example, many people with intellectual disabilities do not communicate discomfort in typical ways. They may become hostile or uncooperative, irritable or withdrawn. They may refuse to eat, or wake frequently during the night. Some people may cry or become agitated but be unable to communicate the source of their distress. This can be extremely challenging for hospice staff, especially if the individual does not have an involved support system of family or friends. 

Pain management can  be especially challenging when working with patients with intellectual disabilities. Many patients with mobility issues (for example, those who are wheelchair dependent) have chronic musculoskeletal pain that worsens at the end of life. Many of these patients will not communicate their pain verbally, but instead will have behavioral changes that indicate that something is wrong. Some nonverbal patients may actually injure themselves when they are hurting, biting or excessively rubbing the painful body part or banging their head against a wall. Some people demonstrate extreme sensitivity to sound or touch and refuse efforts by caregivers to provide comfort measures or alleviate their distress. 

With that being said, there are a number of tools available for assessing distress in nonverbal individuals, including this Distress and Discomfort Assessment Tool developed by a learning disability and palliative care team at Northgate Hospital in Northumberland, U.K. It is incumbent on hospice and palliative care providers to give staff access to as many of these tools as possible. Additionally, staff should receive training in how to tailor their communication about the person’s illness, prognosis and options for care to the individual’s ability to understand. This may involve 

• Using materials written in very simple language with pictures illustrating concepts that may be difficult to grasp
• Presenting information in pictures or video format
• Role playing a situation 
• Using family caregivers to help the patient understand what’s being presented to them.

Whenever possible, all adults with an intellectual disability should have the maximum amount of  autonomy in directing their care. Caregivers should use every tool available to them to elicit meaningful responses to questions about goals of care, invasive treatments or measures to prolong life. However, if an individual with an intellectual disability lacks the capacity to make informed decisions, the court may appoint an advocate guardian to assist the hospice care team. Depending on the person’s level of intellectual disability, this advocate may have the ability to make all, most or only a few decisions about the care the person will receive. However, even if an advocate has been appointed, the care team must make every effort to involve the patient, their family and other caregivers in developing a treatment plan. 

Sources

“Intellectual Disability and ASD”. Children’s Hospital of Philadelphia Research Institute. https://www.research.chop.edu/car-autism-roadmap/intellectual-disability-and-asd 

“Palliative Care and Intellectual Disabilities”. University of Hertfordshire. https://www.intellectualdisability.info/physical-health/articles/cancer,-palliative-care-and-intellectual-disabilities 

“Cardiovascular Complications of Down Syndrome: Scoping Review and Expert Consensus”. AHA Journals. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.122.059706 

“Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)”. Norah Fry Research Centre, University of Bristol. https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf 

“Living with Down Syndrome”. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/birth-defects/living-with-down-syndrome/ 

“How social care staff can recognise and manage pain in people with learning disabilities”. Public Health England. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/656269/Social_care_staff_supporting_pain_management_in_learning_disabilities.pdf 

“Understanding pain in patients with intellectual disabilities”. American Nurse. https://www.myamericannurse.com/understanding-pain-in-patients-with-intellectual-disabilities/ 

“Distress and Discomfort Assessment Tool”. St. Oswald’s Hospice and Northumberland Tyne & Wear NHS Trust. https://www.stoswaldsuk.org/wp-content/uploads/2022/11/disdat-22.pdf 

“Disability Resources”. Disability Rights Florida. https://disabilityrightsflorida.org/disability-topics/disability_topic_info/types_of_guardianship

Hospices across the U.S. offer services to U.S. veterans and their families that strive to provide quality end-of-life care that recognizes the unique needs of this population. Services may be accessed through several channels, including:

• The Department of Veterans Affairs, which offers inpatient hospice services through a network of Community Living Centers or VA nursing homes. The VA also partners with community home hospice agencies that provide hospice care in the veterans home. These services are provided at no charge as long as the veteran meets established criteria, e.g. has a life-limiting illness and a projected life expectancy of fewer than six months. Patients seeking hospice services will need a referral from their VA primary care provider. If you wish to take advantage of this benefit, you will need to first sign up for VA health care. Learn more about how to do so and what information you will need on the Veterans Affairs VA Benefits and Healthcare web page.

• We Honor Veterans, a partnership between the National Hospice and Palliative Care Organization and the VA, which works with community organizations across the United States to provide compassionate end-of-life care to U.S. veterans and their families. The program works to educate hospice providers in the provision of care focused on “respectful inquiry, compassionate listening, and grateful acknowledgment” through a network of over 4,000 partners across the U.S. These partners include:
  • VA Hospice Partners – Hospice providers who have received education and training in providing veteran-centric care, including trauma-informed care for veterans suffering from PTSD, substance use disorder, military sexual trauma, and other psychological issues related to their military service and ensuing life experiences. 
  • VA Community Partners – These include hospitals, skilled nursing facilities, nursing homes, home health agencies and funeral homes that have shown a commitment to recognizing and serving the unique needs of U.S. veterans. 

Partners in the WHV program are ranked from Level One to Level Five based on their reaching certain benchmarks. For example, Level One partners must demonstrate that they ask appropriate questions about veterans’ military service and recognize what the answers may mean. These organizations use resources provided by WHV to educate staff on ways to honor veterans and help them tell their stories as they approach the end of their lives. 

Level Two partners actively work towards building capacity within their organizations, while Level Three through Five work with local and statewide organizations to build capacity within the surrounding community. 

Those seeking care through the WHV program can find a partner in their area by searching this interactive database provided on the WHV website. 

• Medicare – Veterans who are either disabled or over the age of 65 are eligible for Medicare and may access hospice care using the Medicare Hospice Benefit at any time. 

Unique Needs of Veterans at End of Life

Veterans are, first and foremost, individuals, each with their own values, goals and preferences around end-of-life care. Nevertheless, many veterans share similar experiences and, as a result, have similar, specialized needs. Some factors that may influence veterans receiving hospice care include:

Post Traumatic Stress Disorder

Between 7% and 13%  of combat veterans suffer from PTSD, the symptoms of which can become more prevalent and disturbing at the end of life. Pain, shortness of breath, fatigue,  frailty and an overall sense of loss of control can exacerbate existing symptoms of anxiety, self-loathing, hypervigilance and distrust. Flashbacks, intrusive memories, insomnia and panic attacks can occur or recur. Hospice staff trained in trauma-informed care can help alleviate these symptoms and allow the veteran to experience a calmer, more meaningful and less fearful end of life. 

Chronic Pain

About one-half of veterans who receive care at a VA facility experience chronic pain as a result of musculoskeletal injuries, traumatic brain injuries and/or PTSD. As these individuals approach the end of life, their pain often increases due to physical stressors, the effects of illnesses such as cancer, and psychological issues such as fear, anxiety and depression. Hospice providers who offer veteran-centric care are aware of these issues and work to ease the patient’s suffering using a comprehensive, multidisciplinary approach. 

Depression

According to Pathways, a community partner of We Honor Veterans, 11% of veterans over the age of 65 suffer from major depressive disorder, more than twice the number of non-veterans in the same age group. Untreated depression can lead to feelings of worthlessness, lack of motivation, loss of pleasurable feelings and thoughts of suicide. These feelings can be greatly increased by end-of-life symptoms such as pain, anxiety, fatigue and emotional distress. Hospice providers trained in veteran-centric care assess each patient who enters hospice for symptoms of major depression and work with an interdisciplinary team to provide appropriate psychological care. 

Substance Use Disorder

Substance misuse, including illicit drugs, prescription painkillers and alcohol, is prevalent among veterans in all age groups. Alcohol use disorder is particularly common in older veterans, many of whom have co-occurring mental health issues such as depression and PTSD. This population presents particular challenges to hospice providers as they may be less responsive to analgesic and anxiety-relieving medications due to chronic drug and/or alcohol use. Hospice providers must be sensitive to this reality and use all modalities available to help veterans with SUD achieve a meaningful end of life. 

Of course, these are just a sampling of the issues that may affect military veterans. Even those who do not have a chronic physical or mental illness may carry psychological burdens associated with combat, including feelings of guilt and shame, or fear of retribution in the afterlife for acts committed during war time. As caregivers strive to control physical symptoms related to end of life, another goal of hospice for veterans is to help them tell their stories through compassionate inquiry and honor their life journeys through non-judgmental emotional support.

Sources

“About VA health benefits”. U.S. Department of Veteran’s Affairs. https://www.va.gov/health-care/about-va-health-benefits/

“Mental Health”. U.S. Department of Veteran’s Affairs. https://www.mentalhealth.va.gov/msthome/index.asp 

“What is Trauma-Informed Care?” Trauma-Informed Care Implementation Resource Center. https://www.traumainformedcare.chcs.org/what-is-trauma-informed-care/ 

“Partner Directory.” We Honor Veterans. https://www.wehonorveterans.org/partner-directory/ 

“PTSD and Veterans.” Hill & Ponton. https://www.hillandponton.com/resources/veterans-statistics-ptsd/ 

“PTSD: National Center for PTSD”. U.S. Department of Veteran’s Affairs. https://www.ptsd.va.gov/professional/treat/care/index.asp 

Pathways Home Health and Hospice. https://www.pathwayshealth.org/

Since questions about sexual orientation or gender identity are not routinely asked of patients upon admission to hospice, it is difficult to assess whether LGBTQ+ patients receive similar care to that provided to cisgender or heterosexual patients. Many may not seek palliative or hospice care in a timely manner, or at all, due to fear of discrimination.   

Due to history of family, social, and legal discrimination, this population often suffers health disparities, particularly as they age. LGBTQ+ older adults are less likely to have children, may be estranged from family, and are more likely to live alone. This lack of support can often influence medical decision making.

Lack of mainstream diverse and inclusive health care can additionally cause unique challenges for LGBTQ+ patients seeking medical care. According to the World Health Organization, LGBTIQ+ patients experience a higher likelihood of adverse physical or mental health outcomes, human rights violations and discrimination. These factors may cause delays in seeking necessary medical interventions that put this population at higher risk of premature death.

Finding an LGBTQ+ inclusive hospice provider

Aside from asking those you know and trust for recommendations, there are few options readily available to assist your search for LGBTQ+ life affirming health services for you or a loved one. The book, LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice provides organizations with tips to assess their company’s inclusivity. It suggests criteria that may be helpful in locating an LGBTQ+-friendly palliative or hospice provider in your area. Some things to look for when seeking an inclusive provider include:

• Its nondiscrimination policy and statement includes language such as gender identity, gender expression or sexual orientation and is easily located on its website and in its written marketing materials.
• Its website and brochure include at least one same-gender dyad photo
• The company has placed a paid advertisement in a print or online LGBTQ+ publication
• The provider has offered at least one LGBTQ+-specific bereavement group in the past year.

Additionally, you can reach out to one or more resources and LGBTQ+ advocacy organizations for referrals or assistance. These include:

SAGE – National Resource Center on LGBTQ+ Aging – advocacy services for LGBTQ+ elders (See its 10 Tips for Finding LGBT-Affirming Services for specific ideas.)

PFLAG – (parents, family, friends and loved ones of lesbians and gays) – the largest organization supporting, educating, advocating for LGBTQ+ people and those who love them

National LGBT Cancer Network – educating, training, and advocating to improve the lives of LGBT cancer survivors and those at risk

Summary

The number of people who identify as LGBTQ+ in America is growing, and many of them are aging. By 2030, the number of LGBTQ+ people over the age of 50 in the U.S. is expected to grow to around 7 million. More than 67% will need elder care and services, according to SAGE. As this need for care grows, so too does the need for healthcare that supports inclusion.

The Older Americans Act, which funds the U.S. Administration on Aging and Area Agencies on Aging does not explicitly include LGBTQ+ people as a population of greatest social need. While state and local agencies are encouraged to provide cultural competency training, limited funding may not support consistent or tailored programs aimed at better assisting this population. If interested, learn about ways to advocate and educate policy makers on LGBTQ+ aging issues.

Sources

“Cisgender”. Merriam-Webster. https://www.merriam-webster.com/dictionary/cisgender 

“Improving LGBTIQ+ health and well-being with consideration for SOGIESC”. World Health Organization. https://www.who.int/activities/improving-lgbtqi-health-and-well–being-with-consideration-for-sogiesc 

“10 Tips for Finding LGBTQ+-Affirming Services”. SAGE USA. https://www.sageusa.org/about-us/ 

“Find a Local Chapter”. PFLAG. https://pflag.org/findachapter/ 

“State Organizations”. SAGE USA. https://lgbtagingcenter.org/state-organizations/ 

“Programs and Resouces”. National LGBT Cancer Network. https://cancer-network.org/ 

“Older Americans Act”. Administration for Community Living. https://acl.gov/about-acl/authorizing-statutes/older-americans-act 

“Understanding Issues Facing Older LGBT Adults”. Movement Advancement Project. https://www.lgbtmap.org/file/understanding-issues-facing-lgbt-older-adults.pdf 

While hospices provide similar standards of care for patients, most providers offer specialized care or programs to better serve the needs of diverse populations. Military service, sexual orientation, ethnicity, gender, race, religion, or cultural beliefs can influence how care is given, as well as how it is perceived by the patient and their family. Thus the need for hospice providers to recognize and remain sensitive to the needs of diverse patient populations is very real. This is especially true today, when the U.S. population is becoming more ethnically and racially diverse; more people identify as LBGTQ and non-binary, and people with both physical and developmental disabilities are living longer lives. 

Specifically, cultural, racial, or ethnic beliefs can influence patient care preferences or treatment goals in many ways. The American Psychological Association offers the following examples:

• Preference for less or more aggressive treatments
• How pain should be managed (or not)
• Whether family should be involved in primary decision making
• Beliefs about life saving measures (resuscitation, feeding tube, intubation)
• Attitudes toward advance planning
• Views on death and dying
• Differing opinions on what constitutes quality of life

What’s more, members of certain ethnic minorities, particularly Blacks and Latino individuals, often have a deeply ingrained and well-founded distrust of the medical system, which can negatively impact their ability to accept hospice or palliative care. 

Ensuring Culturally Sensitive Care

Throughout the U.S. healthcare system, implicit and explicit bias and discrimination has historically had a negative effect on the healthcare outcomes of racial, ethnic and cultural minorities, including at the end of life. And while efforts have been made to address these inequities, culturally sensitive educational programs for doctors, nurses and ancillary care providers are not widespread. Further, racial minorities remain underrepresented in the healthcare workforce today. 

Still, some hospice providers are making efforts to be more inclusive and incorporating training for their employees in how to provide care within a cultural framework while remaining aware of the fact that every patient is an individual with deeply held values, goals, preferences and needs. As noted in the publication Diversity and Discrimination in Healthcare by Brandon M. Togioka et al., focusing on “typical” characteristics of minority groups can reinforce the incorrect assumption that the impact of culture on a person’s beliefs and values is “fixed.” Instead, the authors suggest that healthcare providers realize that a patient’s views are influenced by culture, race, ethnicity, gender identity and individual life experiences but are determined by many other factors that can only be elicited by getting to know the”person behind the patient” and meeting that person’s needs. 

Sources

“1.2 million LGBTQ adults in the US identify as nonbinary”. UCLA School of Law: Williams Institute. https://williamsinstitute.law.ucla.edu/press/lgbtq-nonbinary-press-release/ 

“Culturally Diverse Communities and Palliative and End-of-Life Care”. American Psychological Association. https://www.apa.org/pi/aging/programs/eol/end-of-life-diversity 

“Understanding and Ameliorating Medical Mistrust Among Black Americans”. The Commonwealth Fund. https://www.commonwealthfund.org/publications/newsletter-article/2021/jan/medical-mistrust-among-black-americans 

“Diversity and Discrimination in Health Care”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK568721/ 

An end-of-life doula or death doula (also known as a death midwife or death coach), similarly to a birth doula, is a professional who offers emotional and physical support while guiding one through their transitional event. The end-of-life doula aids and comforts the dying person as well as their loved ones while offering education and guidance about the dying and grief processes. They can also play a valuable role in ensuring their patients’ needs and wishes are met, coordinating with medical providers and/or the hospice team as well as the patient’s family and other people of significance. 

Death doulas typically aren’t licensed to provide medical care, and though there aren’t national or state requirements or licenses to become a death doula, most undergo training or certification from various programs. When seeking an end-of-life doula, word of mouth, positive reviews and research can provide valuable insight.

Potential services of an end-of-life doula

Keeping in mind that every doula is as distinct as each dying person and their needs, the ways they serve can vary. However, typical duties can include: 

• Talking about death, dying and grief openly and honestly
• Overseeing care along with the hospice/palliative/medical team
• Discussing advance directives or end-of-life planning
• Arranging the look, feel, smell, etc, of the dying person’s environment
• Supporting the dying person’s religion or spirituality with end-of-life rituals or meditations
• Sitting vigil with the dying person during their last moments
• Guiding loved ones through their emotions and grief process
• Assisting with funeral or end-of-life arrangements

An end of life doula can be an invaluable asset in providing truly person-centered end-of-life care, especially if your family chooses to provide natural death care and/or a funeral in your home. To find an end-of-life doula in your area, use this search form provided by the International End-of-Life Doula Association. 

Sources

“What an End-of-Life Doula Can Do for You”. Cleveland Clinic. https://health.clevelandclinic.org/death-doula 

“What is a Doula?” INELDA. https://inelda.org/about-doulas/what-is-a-doula/

The adoption of the hospice care model in the 1960s and 70s was an enormous step forward for the healthcare community. Always dedicated to alleviating suffering, those who cared for dying persons now had a model that emphasized not only the patient’s physical needs but their emotional and spiritual well-being as well. More importantly, research demonstrated the value of this person-centered approach in multiple ways. As a result, healthcare providers and policymakers began to look at expanding this care model to any person who was seriously ill. This marked the beginning of the concept of a separate medical speciality known as palliative care. 

In 1990, the World Health Organization officially declared palliative care a distinct medical specialty separate from hospice care. Although the two share a primary goal — alleviating suffering  — palliative care also seeks to prevent or at least obviate the physical, emotional and spiritual distress associated with life-limiting illness by addressing patients’ and families’ needs early in the disease trajectory. It also differs from hospice in that a patient may pursue curative treatments such as chemotherapy or immunotherapy while receiving palliative care. 

At first the idea of palliative care was slow to catch on. Most healthcare providers failed to see the distinction between hospice and palliative care or understand the value of intervening early in the disease course before the patient or their caregivers experienced significant distress. But as medical technologies and pharmaceuticals emerged during the 20th and early 21st centuries that allowed people with life-limiting illnesses to live ever-longer lives, the need to address the needs of this growing population became clear. As a result, between 2000 and 2011, the number of U.S. hospitals offering palliative care programs grew by over 150%. Today, about 75% of hospitals with over 50 beds nationwide have a palliative care program in place. Further, many hospitals are beginning to extend their palliative care programs to include patients in assisted-living facilities, nursing homes and those living at home. 

With that being said, access to palliative care continues to be limited, largely due to the concentration of programs in large urban areas. As of 2019, only 17% of hospitals in the rural U.S. had a palliative care team. Access also varies widely by geographic region. According to the Center to Advance Palliative Care, less than a third of all hospitals in the south-central states of Arkansas, Mississippi and Alabama have a palliative care program, while 100% of hospitals in New Hampshire and Vermont have a palliative care team. Other states in the Northeast, notably Massachusetts and Rhode Island, offer palliative care in nearly 90% of all hospitals. Utah, Montana and Nevada also have robust participation, with nearly 100% of hospitals offering some level of palliative care. 

Sources

“America’s Readiness to Meet the Needs of People with Serious Illness”. Center to Advance Palliative Care. https://scorecard.capc.org/ 

Palliative care is available in a variety of settings, including at home. Although palliative care is frequently associated with settings such as nursing homes, clinics, and hospitals, it is becoming increasingly popular for patients to receive palliative care in the privacy and comfort of their own homes. It’s important to note, however, that not all healthcare providers who offer palliative care to hospitalized patients offer the service after discharge. 

Depending on the needs of the patient, care may be administered by an entire palliative care team or by one palliative care service provider. Visits from these medical providers may occur at a set cadence depending on individual needs and the condition that is being treated. Receiving palliative care at home does not limit access to other services.. Some of the common palliative care interventions used in home settings include: 

• Symptom management and tracking
• Specialized therapy 
• Medication, including pain management 
• Patient and family education 
• Medical evaluations 
• Skilled nursing 
• Spiritual guidance (usually from a chaplain) 
• Assistance with meals and daily activities  

Most palliative care services also include a nurse advice line that is accessible 24 hours a day, 7 days a week. This ensures that both the patient and their caregiver receive ongoing support and have access to appropriate guidance when it is most needed. For example, if a caregiver is uncertain of whether a new symptom or medical concern requires emergency assistance, contacting the advice line and speaking with a nurse can provide a quick confirmation and potential next steps. 

Those who are interested in potentially receiving palliative care at home are encouraged to consult with their healthcare provider or current palliative care team. These medical professionals will assess patient needs to determine whether receiving home-based palliative care is appropriate. Additional consultation with a health insurance provider is recommended to ensure that any care approved by the team is covered as the patient transitions from the hospital or clinic to a household setting. 

Sources

“What Are Palliative Care and Hospice Care?” National Institute on Aging. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care

“What Is Palliative Home Care? Understanding What to Expect”. A Place for Mom. https://www.aplaceformom.com/caregiver-resources/articles/palliative-care#palliative-care-at-home 

“Palliative care can help you stay safely at home”. Get Palliative Care. https://getpalliativecare.org/palliative-care-can-help-stay-safely-home-2/ 

According to established Medicare rules, the Medicare hospice benefit does not cover care that is intended to cure a person’s illness or treat chronic conditions that might shorten a person’s life. This means that if a patient receives benefits for hospice care, curative treatment will not be covered. While this currently remains the case, federal lawmakers recently piloted a program called the Medicare Care Choices Model that examined whether expanding coverage to allow patients to receive both hospice and curative treatments would be of benefit.

In 2016, the Affordable Care Act authorized a limited test of this hospice model that allowed some terminally ill patients to receive both hospice and curative care. The program was created to help policymakers learn whether expanding treatment options would encourage greater participation in hospice, which is still vastly underutilized in the United States. The model was only made available to patients with advanced cancers, chronic obstructive pulmonary disease, heart disease and HIV/AIDS who had been certified by a physician as having six months or fewer to live. 

The patient must also have met the following conditions to participate in MCCM:

• Has been enrolled in Medicare Part A and B for at least 12 months
• Has not elected the Medicare hospice benefit within the previous 30 days
• Resides in a home (not an assisted living facility or nursing home)
• Has had at least one hospital “encounter” (admission, ED visit or observation stay) in the previous 12 months
• Has had a minimum of three office visits with any Medicare approved provider within the previous 12 months 

Patients enrolled in the program continued to receive medical care or curative treatment for their underlying diagnosis from the provider of their choice, while also receiving supportive services from hospice providers in their area. The hospice received a flat monthly fee for the services it provided. 

The MCCM test was implemented in two phases: The first began in 2016, and the second began in 2018. The program concluded in 2020, and was evaluated based on several factors, including cost-savings to Medicare, outcome improvement (fewer Emergency Room visits and hospitalizations) and patient satisfaction scores. 

The results of the MCCM test were deemed equivocal, and the Center for Medicare and Medicaid Services has not announced any decision about expanding the program as of October 2022. This means that terminally ill patients must continue to decide whether hospice or curative treatment is the right option for them.

Sources

“Hospice care”. Medicare. https://www.medicare.gov/coverage/hospice-care 

“Hospice Underutilization in the U.S.: The Misalignment of Regulatory Policy and Clinical Reality”. Journal of Pain and Symptom Management. https://pubmed.ncbi.nlm.nih.gov/30142388/ 

“Findings at a Glance: Synthesis of Evaluation Results across 21 Medicare Models 2012-2020”. Centers for Medicare and Medicaid Services. https://www.cms.gov/priorities/innovation/data-and-reports/2022/wp-eval-synthesis-21models-aag 

“Medicare Care Choices Model”. Centers for Medicare and Medicaid Services. https://www.cms.gov/priorities/innovation/innovation-models/medicare-care-choices 

The term “hospice” dates back to medieval times, when it referred to a place of shelter for weary travelers. It wasn’t until the mid-20th century that the word came to be associated with specialized care for the dying. That is when Dame Cicely Saunders, a British physician, nurse and social worker, began working with terminally ill patients in an effort to bring dignity and comfort to the end of life. At that time, most people in the terminal phase of an illness were simply sent home to die, usually in terrible pain and distress. Morphine was considered dangerous and addictive, so suffering patients rarely received any pain medication, even at the end of life. 

In 1967, Saunders founded the first modern hospice, St. Christopher’s Hospice, in the London suburb of Sydenham. In addition to being the first inpatient facility in London to embrace the philosophy of compassionate end-of-life care, St. Christopher’s pioneered the use of morphine to control dying patients’ pain. But the care provided focused on more than just controlling symptoms. In keeping with Saunders’ philosophy, St. Christopher’s aimed to meet the practical, emotional, social and spiritual needs of the patient and their family, including bereavement care. By 1969, the hospice had begun delivering care to patients in their homes. 

Even before founding St. Christopher’s, however, Saunders was working to spread the word about the need to provide more compassionate care to people at the end of life. In 1963, she traveled to the United States, and while there, gave a lecture at Yale. As she spoke, she showed the doctors, nurses and social workers in attendance photos of dying patients before and after they began receiving appropriate symptom control. This so impressed Florence Wald, then Dean of the Yale School of Nursing, that she invited Saunders to become a visiting faculty member for the spring term. Wald later went to England to study under Saunders at St. Christopher’s Hospice, and in 1974 she joined two physicians and a chaplain to found Connecticut Hospice in Branford, Connecticut, the first modern hospice in the United States. 

Over the next decade, the federal government and private foundations funded a great deal of research on the benefits of hospice care. For example, in 1978, the National Cancer Institute sponsored three hospice demonstration projects in order to evaluate the type of care provided and associated costs. And in 1981, the W.K. Kellogg Foundation awarded a grant to the Joint Commission on Accreditation of Hospitals to develop national standards for hospice care. 

Then, in 1982, Congress enacted the Tax Equity and Fiscal Responsibility Act (TEFRA), which made hospice a Medicare-covered benefit. Their rationale was simple: Years of research demonstrated that hospice would provide substantial cost savings over inpatient hospital care. The initial legislation limited the benefit period to 210 days based on study data that showed that more than 95% of the patients were on hospice for fewer than 210 days. The benefit period was later revised and eventually removed entirely. Instead, Medicare now requires that patients receiving hospice care are recertified as being terminally ill by a doctor after 6 six months and every 90 days thereafter. 

TEFRA also established what is still a hallmark of hospice care — the interdisciplinary care team. Hospice providers were, and to this day still are, required to coordinate patient care with input from a doctor, a nurse, a social worker, a spiritual counselor of some sort and the patient and their family. The legislation also required the involvement of volunteers and the provision of bereavement care to the family after the patient’s death.

Sources

“Dame Cicely Saunders”. St. Christopher’s. https://www.stchristophers.org.uk/about/damecicelysaunders/ 

“Our History”. St. Christopher’s. https://www.stchristophers.org.uk/about/history/ 

The Connecticut Hospice. https://www.hospice.com/ 
“Hospice and Medicare: 20 years of growth”. Relias Media. https://www.reliasmedia.com/articles/79895-hospice-and-medicare-20-years-of-growth

Hospice and palliative care have very similar treatment goals. But unlike hospice care, which is limited to people whose doctors estimate they have six months or fewer to live, palliative care doesn’t depend on a prognosis, and patients receiving palliative care can pursue curative therapies at the same time. 

Health care providers once thought of hospice care and palliative care as one and the same. That is, they viewed the care provided to a person with a life-limiting illness as either curative or palliative (aimed at treating symptoms of an illness but not the underlying disease). But over the past decade, palliative care has evolved into a specialty that treats anyone who is seriously ill, regardless of where in their illness trajectory they may be. This includes but isn’t limited to people living with these conditions:

• Cancer
• Heart disease
• Chronic obstructive pulmonary disease
• Chronic kidney disease
• Parkinson’s disease
• Alzheimer’s disease and other dementias 

With that being said, the goals of both hospice and palliative care are the same: relief of symptoms, easing of emotional and spiritual suffering, and family support. Further, both care models employ the same kind of multidisciplinary teams — a group of health care professionals that typically includes a doctor, a registered nurse, a social worker, a mental health professional, a member of the clergy and volunteers. But because palliative care may extend over many months or even years, the team may also include occupational and physical therapists and financial counselors as well. These professionals work with patients to help them maintain or regain physical function and find resources to pay for medical care, household expenses and the like. 

As a person’s illness progresses towards the terminal phase, the palliative care team can also be instrumental in helping the patient transition from curative to comfort care. This may be a gradual process that involves multiple discussions aimed at identifying interventions that are no longer improving the patient’s quality of life and readjusting the goals of care. At some point, this usually involves transitioning to hospice care. 

Sources 

“What is palliative care?”. MedlinePlus. https://medlineplus.gov/ency/patientinstructions/000536.htm 

Unfortunately, in most situations, hospice staff do not provide all or even most of the care patients need. Instead, family members or hired caregivers are responsible for the lion’s share of physical care, even for patients who are very sick with many complex needs. Hospice provides the necessary equipment, such as a hospital bed, an oxygen concentrator and medicines for pain and anxiety. And a registered nurse visits the patient during the first 24 hours to perform an initial assessment and instruct the family on how to provide needed care. But beyond that, nurses typically act in an advisory role, giving advice and answering questions over the telephone. Nurse aides and volunteers may visit more regularly, but according to a recent report from Kaiser Health News, the average amount of time spent with the patient by hospice caregivers is about 30 minutes per day. 

Most patients and their care partners are totally unprepared for this reality or the physical demands of caring for a dying loved one in the home. Although they may have some experience caring for their loved one’s basic medical needs, such as ensuring that they take medications on time, many people are overwhelmed with the more complex care required as their loved one becomes increasingly ill. They may, for example, need to do the following:

• Adjust pain medications, sometimes many times each day
• Lift and reposition the patient for comfort, toileting and skin care
• Change dressings and provide wound care
• Change diapers 
• Give medicines and fluids through a feeding tube
• Administer oxygen

For family caregivers who are also struggling with the demands of everyday life and the reality of losing someone they love, providing this level of care can be enormously burdensome. Many people eventually turn to paid caregivers, although few can afford to hire someone to provide care 24 hours a day.

Sources

“Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families”. KFF Health News. https://kffhealthnews.org/news/home-hospice-care-unexpectedly-burdens-family-caregivers/ 

Organizations

Experts

Ira Byock, MD, FAAHPM 

A leading medical authority, author, and public advocate for improving care for people living with serious medical conditions. Dr. Byock is an active emeritus professor of medicine and community & family medicine at Dartmouth’s Geisel School of Medicine. During his clinical career, he earned specialty certifications in Family Medicine, Emergency Medicine, and Hospice & Palliative Medicine. Dr. Byock has been involved in hospice and palliative care since 1978. He is a past president of the Academy of Hospice and Palliative Medicine. From 1996 to 2006, Dr. Byock directed a national grant project of the Robert Wood Johnson Foundation that developed prototypes for concurrent palliative care within mainstream health care. From 2003 to 2013, he led the Section of Palliative Care within the the Dartmouth Health system based in New Hampshire. In 2014, Dr. Byock founded the Institute for Human Caring within the multi-state Providence health system. The Institute drives transformation to make caring for whole persons the new normal. The Institute’s change strategies produce measurable and scalable improvements in health care quality and efficiency. Since leaving his position with the Institute in 2022, Dr. Byock is the Principal Consultant for Clinical Transformation Specialists PLLC, which advances highly personalized care as a values strategy for American healthcare. Dr. Byock has authored numerous articles in academic journals. His research has contributed to conceptual frameworks for the lived experience of illness, developed measures for subjective quality of life, and refined counseling methods for life completion and wellbeing. His article, Taking Psychedelics Seriously, in 2018, helped spark renewed interest in psychedelic-assisted therapies within the field of palliative care. His first book, Dying Well, became a standard in the field of hospice and palliative care. The Four Things That Matter Most is widely used in counseling within palliative care, pastoral care, and psychology. The Best Care Possible presents the potential for health care transformation. Dr. Byock lectures nationally