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.
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.
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.
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.