Hospice, Palliative Care, and Beyond
By, Katie M. Dodd, MS, RDN, CSG, LD
If you work in health care, you have likely heard about palliative care and hospice care. But what exactly are these types of care- in what ways are they similar or different? Having knowledge about these important services is imperative for all health care providers, regardless of the setting you work in.
End of Life Care
When discussing hospice and palliative care, most people think of end of life care. Per the National Institute on Aging, end of life care is the support and medical care given during the time surrounding death (1). They make the point that this time is not simply the moments before the lungs stop working and the heart stops beating. It is beyond that. It is the days, weeks, or even months before death.
Discussions around end of life care can often be scary for the patient and their loved ones. But the reality is, even the best doctors cannot give a finite answer on when life will end. Being involved in discussions about end of life care early on is beneficial so the patient and their families can be prepared.
Two common services provided in end of life care are hospice and palliative care.
Hospice versus Palliative Care
According to the Centers for Medicare and Medicaid Services, hospice is a program of care and support for a dying person whose doctor and a hospice medical director certify has 6 months or less to live (2). Hospice care services can be offered at home or in a facility; such as a hospital, nursing home, or assisted living.
The hospice team varies by individual program, but may include nurses, medical providers, social workers, dietitians, and chaplains. A member of the hospice team is always available- twenty-four hours a day, seven days a week (2). They are an invaluable support system to the patient and their families.
Hospice provides a variety of services with the goal to provide comfort care. Typical services include medical and nursing care, providing necessary medical equipment and supplies (from walkers to catheters), pain management, hospice aid and homemaker services, physical and occupational therapy, dietary counseling, social work services, grief and loss counseling, and even respite services for caregivers experiencing burnout (3).
The focus of care for hospice is on comfort and not curative care. This means that a patient must be willing to give up curative treatments in order to receive hospice care. In fact, when signing up for hospice, they must sign a statement that they are choosing hospice instead of other Medicare-covered benefits to treat their medical conditions (3). Some people may not be ready to give this up and that is OK. For them, palliative care may be an option.
Unlike hospice care, you do not have to be dying or give up curative treatments to receive palliative care. Palliative care has a role in end of life care, but it is not exclusively for end of life. Palliative care is a treatment available to anyone of any age who is suffering from the discomforts, symptoms, and stress of a serious illness (2).
Palliative care is meant to help people find relief from their chronic conditions and treatments. Common illnesses treated by palliative care include heart failure, chronic obstructive pulmonary disease, cancer, dementia, among others. Older persons who are living with one or more chronic illnesses may benefit from palliative care long before need for hospice care. And unlike hospice, which has a 6-month window, palliative care may be used for as long as necessary.
For the patient struggling to come to terms with their terminal diagnosis, they may feel more comfortable with the idea of palliative care over hospice care. Some people may feel that if they accept hospice, they are accepting that they have less than 6 months to live. That can be hard. For them, palliative care may feel like better option. The palliative care team can support the patient with a focus on comfort care and can always assist them into a later transition to hospice care.
The table below provides further explanation on the difference between hospice and palliative care.
Table: Hospice versus Palliative Care
Hospice with Curative Care?
As previously mentioned, the biggest difference with hospice and palliative care is that with hospice care, patients have to give up all curative treatments. This is frequently a barrier to patients accessing hospice services. A patient may truly need and benefit from hospice, but they just aren’t quite ready to “throw in the towel” and waive the curative treatments they are still receiving. But what if there was an option where hospice patients could still access curative care?
This is something that Medicare that is looking at right now (4). They are testing a new option for Medicare beneficiaries to see what happens when they offer both hospice and curative care. This means that hospice patients would continue to receive care for their terminal condition. This is something that has never been offered before.
Medicare Care Choices Model (MCCM)
This model being tested is called the Medicare Care Choices Model, or MCCM, and is authorized under section 3021 of the Affordable Care Act. Through the MCCM, Medicare beneficiaries can receive hospice care while continuing to receive services through other Medicare providers for their terminal condition (4). They are giving hospice patients a choice. This idea was first introduced in 2014 and the trial is ongoing.
Initially this model was only intended to have 30 Medicare-certified hospices involved, however due to robust interest they ended up taking on 141 Medicare-certified hospices and extended the duration of the model from 3 to 5 years (4). The 141 participating hospices were randomly assigned to one of two cohorts.
The first cohort began providing services to beneficiaries on January 1, 2016 and the second cohort began providing services on January 1, 2018. Both cohorts will end on December 31, 2020. During this time Medicare will be evaluating whether MCCM improves quality of life, increased patient satisfaction, and reduces Medicare expenditures (4).
While it will still be some time before we find out whether or not Medicare decides to implement this model into all hospice programs or continue with care as usual, Medicare has already released a report on how the trial is going.5 The first annual report on the evaluation of MCCM was released September 2018.
Of the 141 hospices participating, 37 hospices (26%) ended up withdrawing from MCCM for a variety of reasons from staffing changes to competing business initiatives to dissatisfaction with certain elements of participating in the model. Over 5,000 beneficiaries were referred to participating MCCM hospices, however only 1,092 participants had actually enrolled in the MCCM when this report was compiled (5).
Unfortunately, enrollment was too low to determine if there were any financial or other outcomes at end of life as of the first annual report (5). The report does document that changes to eligibility criteria continue to be modified in an attempt to minimize the challenge of enrollment. Hopefully these small changes will lead to more participation in the model.
Despite these low numbers, hospice staff and patients generally have expressed great satisfaction with the MCCM and the care they are receiving (5). There is certainly a lot of hope and opportunity for how the MCCM may impact patients at end of life and their families. And there is still more time to collect data and show results on the impact of offering Medicare hospice beneficiaries this added choice of receiving hospice care and treatment for their terminal conditions.
While people may need hospice and palliative care at any age, nearly 95% of hospice patients are age 65 and older (6). We are seeing extensive growth in the older adult population with the wave of baby boomers turning age 65 in 2011. It is estimated that by the time all baby boomers reach age 65 or older in 2029, over 20% of the U.S. population will be over age 65 (7). With the aging of the population, the need for hospice and palliative care will only continue to grow.
Hospice and palliative care are amazing services; however, they are both underutilized. Misconceptions about what these services are and fears over end of life and “giving up” can be a barrier to patients accessing these services.
Health care providers play an active role in supporting patients as they transition in care- whether it is at end of life or any stage of life. The future of end of life care with the prospect of MCCM is exciting. This could mean less barriers and more access to needed services. Only time will tell what options continue to unfold in this important field.
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1. End of Life: Helping with Comfort and Care. NIH National Institute on Aging website. https://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/introduction. Updated May 17, 2017. Accessed April 17, 2019.
2. What Are Palliative Care and Hospice Care? NIH National Institute on Aging website. https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care. Updated May 17, 2017. Accessed April 17, 2019.
3. Your Medicare Coverage: Hospice Care. U.S. Centers for Medicare & Medicaid Services website. https://www.medicare.gov/coverage/hospice-care. Accessed April 19, 2019.
4. Medicare Care Choices Model. CMS Innovation Center website. https://innovation.cms.gov/initiatives/Medicare-care-Choices/. Updated April 11, 2018. Accessed April 19, 2019.
5. Evaluation of the Medicare Choices Model: Annual Report #1. CMS Innovation Center website. https://innovation.cms.gov/Files/reports/mccm-firstannrpt.pdf. Released September 2018. Accessed
6. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, April 2018.
7. Colby S, Ortman J. The Baby Boom Cohort in the United States: 2012 to 2060. Washington DC: United States Census Bureau, May 2014.