Of all the uncomfortable topics at the dinner table, dying tops the list. According to the National Hospice Foundation, people are more likely to talk about safe sex practices with their children than to discuss end-of-life issues with their elderly parents. One in four Americans never write down instructions regarding how they want to be cared for at the end of their lives. One in five reports not having given the subject any thought at all.
The sad result is that too many Americans consider hospice care too late, and often end up dying in acute care hospitals. This is a shame, because so many could die in comfort and dignity at their own homes, if only given the support to do so. When asked, the majority of Americans say they’d prefer to die at home.
According to the National Hospice and Palliative Care Organization, for every individual who enters hospice, two more eligible people die in acute or long-term care facilities. This is despite the fact that Medicare guarantees high-quality end-of-life care, both to eligible beneficiaries, and to their families.
What is hospice?
There are a great number of misconceptions regarding hospice. It is useful to define both what hospice is and what hospice is not.
According to the American Association of Retired Persons (AARP), hospice is more of a philosophy than a physical location. That philosophy understands that death is an integral part of life that should be managed with the same degree of dignity and attention to personhood as every other aspect of life. Hospice is not the same thing as palliative care, strictly speaking, although there are considerable overlaps between the concepts. Palliative care refers to treatment designed not to cure, but to maximize comfort. It includes palliative surgery, by definition an invasive intervention. Hospice care, by contrast, focuses on maintaining the physical integrity of the individual facing death.
Many people mistakenly believe that choosing hospice means forgoing medical treatments altogether. Efforts to maximize comfort using medical technologies can be quite proactive. The caveat is that the current Medicare hospice benefit specifically excludes curative treatments. Nevertheless, the 2017 Health and Human Services budget included plans for a pilot program of curative treatments in the hospice setting. The study is expected to end in 2022.
Others believe that the decision to enter hospice is final. This too is a myth. An individual can opt out of hospice care at any time. It is not uncommon for people to underestimate how much time they have left. One perhaps unexpected benefit is that individuals under hospice care often become stronger and more capable, often deciding to forgo care until their condition worsens again.
Other benefits of home hospice care
Hospice care encompasses care of the entire family. For complex cultural reasons, most Americans are unfamiliar and are easily frightened by having a dying loved one at home. The compassionate education provided by hospice nurses can substantially ease anxieties on the part of family members. Medicare includes a respite benefit as well, in which family members temporarily increase the level of home nursing, allowing themselves time away to de-stress and recover the strength to handle the imminent death of a loved one. The benefits of hospice do not end at death. The Medicare hospice benefit includes grief services for up to one year after a loss.
Physicians are beginning to discuss end-of-life planning with their patients, thanks to incentives from Medicare. There is no such incentive for attorneys to discuss these issues with their clients. Nevertheless, individuals should strongly consider putting their wishes in writing, if for no other reason than to increase their chances of dying where they want to die, at home.