Hospice care and palliative care: What’s the difference?

I’ve talked to hundreds of people about the health care options and decisions they face at the end of life.  It’s a challenging time and understandably many have little knowledge, while others have misconceptions, and some have bitter disagreements.

Here’s a basic primer for two common approaches: hospice and palliative care.

Hospice care

Two myths about hospice care are prevalent.  First, many people believe hospice is provided in a place like a hospital.  While it’s true many hospices have residential facilities, hospice care is usually given at home.

Second, people often believe that with hospice, there is no treatment but pain control.  That’s not the case at all.  Medical care will continue as before, except that further attempts to cure the major disease will stop.  If a person gets a bladder infection, or pneumonia, for example, regular treatment will be available.  If the person chooses to not go to a hospital for treatment of something like pneumonia, treatment at home will be offered.  And if a breakthrough cure of the primary disease occurs, it will not be denied to the hospice patient.

Often I am the first one to bring up hospice care with the patient or their family.  As geriatricians, my colleagues and I see many people with incurable and late stage disease.  (It’s important to know that hospice care is available for all ages, though.)  For patients and families, electing hospice care means extra help for the family, and occasionally the provision of helpful equipment.  We bring up hospice care when we believe the patient or family will benefit from these extra services.

Sometimes it’s a touchy subject.  I’ve been angrily yelled at by family who want the patient to keep trying for cure, to keep taking chemotherapy, to try more radiation, to go for more surgery or to some other country for some unproven therapy.  We frequently think these family members are either uninformed or in denial.  We sometimes wish they could feel their loved one’s nausea, weakness and confusion from hopeless chemotherapy, or their desperate struggle for air in advanced lung disease.

Sometimes the cost of hospice is a concern. Medicare and most insurance companies cover hospice care.  Hospice is covered under Medicare Part A.  There is no deductible, and copayments are very low.  The restriction is that care must be coordinated by the hospice team.

Palliative care

Hospice care is defined fairly clearly by Medicare and other insurers.  “Palliative care” seems more ambiguous – there is no standard definition – and is often less understood than hospice care.   Palliative care is focused on making patients as comfortable as possible with an emphasis on maximizing the quality of daily life. It is provided in different ways.  In our Palliative Care Consult Service, we provide suggestions to the regular treating physician and to the family, usually about pain and other symptoms.  Our consult service often includes a social worker and a faith community representative.

Bitter disagreements about end of life care come not only from family members but also from providers.  About 15 years ago, when I was with the National Institute on Aging, I had a discussion with an oncologist who represented a professional society.  He argued that there should be no limit on chemotherapy, up to the point of death.  We discussed a new therapy that would add one month of life expectancy to a geriatric patient.  His position was that regardless of the intense side effects it caused,  it should be prescribed and encouraged.  My position was it should be discussed with the patient, and if it is declined, that decision should be respected. Now years later, that controversy persists, not just among oncologists.  Terminal care is also provided by pulmonologists, cardiologists, and generalists, for example, some of whom advocate intensive care to the end, while  others respect the patient’s request for limited care.

Two continents

This basic primer is like a map.  “There is North America, and there is Europe.”  They are separated by an ocean, yet they have much in common. North America is like hospice, with clear boundaries.  Palliative care may be more like Europe, which merges into Asia (which may be like “usual care”).  Where one stops and the other begins is mostly a political decision, just like the separation of palliative vs. usual care.

End of life care can be challenging, and the options may seem murky.  In order to find their way, patients, family members and physicians might benefit from “GPS” systems, including helpful road side assistance to help them navigate these complex health care decisions. Definitions and primers are just the start of customizing this final journey.

James Cooper is Clinical Professor of Medicine, Division of Geriatrics and Palliative Care, George Washington University.  He blogs on the Prepared Patient Forum.

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  • http://www.newatlantean.com/ Robert Hewes

    I apologize, but I’m still a bit confused about the difference. Are the two types of care mutually exclusive? Or would hospices provide palliative care in addition to other services? If the latter, what additional services would a hospice provide?

    Or, if palliative care is just focused on alleviating symptoms, is it appropriate for people not facing the end of their lives?

  • http://twitter.com/MMaldonadoMD Maria Maldonado MD

    There are differences in the benefits you get with hospice vs palliative care. With hospice, the patient can receive help with home care (shopping, cleaning, laundry, etc.) without a skilled nursing need. With palliative care, that’s not available unless there’s a skilled nursing need (wound care, dressing changes, osteomy care, PT, OT, etc.) With hospice a physician must certify that in his/her opinion the life expectancy likely won’t exceed 6 months (though there can be extensions). So, yes, hospice care does provide palliative care in addition to other services. The hospice approach is holistic and team based (as is palliative care). And home hospice refers to all of these services provided in the patient’s home.

    • http://www.newatlantean.com/ Robert Hewes

      Thanks doctor!

  • katerinahurd

    Do you think that hospice care has resulted from the futility of certain medical treatments? do you believe that hospice care offers a non- medicalized dying process? Under what conditions would hospice care merge with paliative care? Do you think that the crucial factor would be the state of disease of the patient? What if the person is merely physically disabled?

  • leslie fay

    After almost 40 years as a respiratory therapist it has been my experience and those of many of my coworkers that the vast majority of family members are acting because of their own needs-frequently guilt or money. They think about how they feel, not how the patient feels. Even what the patient has specifically filled out a DNR order their family overrides it and the patient is subjected to days, weeks and sometimes even months of painful procedures that does not prolong life, it only prolongs death. Whoever wrote “Americans think death is optional” was so right

    • http://www.practitionersolutions.com Niamh van Meines

      Leslie, I believe fear is the biggest factor as many people want to “do” something to help and change the situation or turn the clock back. The hospice team can help to manage the difficulties that families have. While many make decisions that are in line with what they want, we can’t fault them for the suffering that they are enduring while witnessing the decline and loss of someone in their lives. The navigating of the dynamics that help the loved ones are the true skills of the hospice team in addition to the relief of suffering through good pain and symptom management.

      • leslie fay

        I agree that people don’t want “this” situation. I also agree that hospice people are wonderful and incredibly strong to do the stressful work that they do every day. I had hospice for my mother. I think that the physicians need to be more proactive in suggesting hospice. I think they need to eliminate the ideas that keeping a patient a full code will change the outcome. I’m not saying that it is not difficult. I’m saying that frequently it is difficult for the wrong reasons.