I probably lost many readers just by having hospice in the title; hospice may be the most misunderstood thing in American health care. The mere mention of hospice crosses a line–for many it’s synonymous with death or giving up hope. And, while hospice isn’t related to highly controversial concepts like euthanasia or assisted suicide, it’s sometimes confused for these radically different things. Misunderstanding and mistrust of hospice is leading to unnecessary suffering, quicker and uglier medical deterioration, and missed opportunities for better and occasionally longer lives for people with serious illness.
What is hospice? Essentially, it’s a group of services–it’s useful stuff that is provided, brought, added (in a personalized way) to the care of a person with advanced stage illness. The extra stuff is delivered by teams of highly trained and caring visiting nurses, social workers, chaplains, personal care workers, physicians, pharmacists, volunteers, and more.
These teams know a lot about serious medical conditions like cancer, heart disease, and Alzheimer’s disease, and they also have special knowledge in pain management, relieving anxiety, and helping stressed out families. They can address everything from difficulty breathing to constipation, from not being able to sleep to sleeping too much. Services are mostly provided in the home, while sometimes care occurs in hospitals and other facilities. Medications, medical equipment, oxygen, supplies and bandages are all provided. There is 24/7 availability of help on call.
Conversations about hospice often stop or get delayed because hospice requires you to have a life limiting medical diagnosis where survival is expected to be 6 months or less, and the stated goals of healthcare are more about comfort and quality of life than cure. These requirements are often conversation stoppers because they are misinterpreted by people who would have better and possibly longer lives with hospice. People erroneously see the decision as a black and white choice between fighting on and giving up.
There is no requirement that hospice recipients die in 6 months or less. In my decade plus working closely with hospice programs I have regularly seen that some people enrolled in hospice live longer than what is typically expected for people with their stage of disease–the longer than expected survival is not in small part because of all the extra help, added medical attention and tender loving care provided by hospices. And, though people turn to hospice because cures have been elusive, there’s certainly no requirement to give up hope, and if a previously untried or new treatment unexpectedly becomes available or appropriate there’s no prohibition on later deciding to dis-enroll in hospice.
I have never witnessed anything being done in hospice to purposely to hasten death or shorten life, the only technical exception being the shared decision to de-activate medical technologies such as ventilators and implanted cardiac devices in situations where the technology was considered futile, harmful, or contrary to the someone’s stated wishes.
Another barrier to getting people to choose hospice is how imperfect and unprepared we doctors and nurses are about talking to people about hospice. In the often hurried environments of health care and our mainly technical backgrounds, we sometimes struggle to say the right words, forget to skip the wrong words, fail to spend enough time and don’t always convey the real nuances and individualization that is possible in hospice care. I’m optimistic efforts, like Dr. Atul Gawande’s “5 Questions,” will help us get better in the future.
If you or anyone you know has advanced illness that isn’t meaningfully getting better (or keeps getting worse) in spite of many treatments and hospital stays and doctors’ visits then you owe it to yourself to learn more about hospice sooner rather than later. This is especially true for more frail elders with serious illness because the hazards of additional hospitalizations and certain treatment side effects are more serious and more common. Ideally, hospice care is set up on a better day, in advance of a true crisis so that the hospice team and person receiving services can get to know one another and set up truly personalized care. Too many people elect hospice so late in their course of illness that they miss out on many of the benefits.
In my decade plus work with and within hospice programs I have seen countless times how more care and services help people with serious illness and their families live better lives with whatever time they have left. For us insiders, we have come to understand hospice is not about death. It is a practical and tangible way to help people continue to live at home and in the community, to live life to its fullest with dignity and comfort, to live more connected to family, friends, and faith, to live more reflective on one’s history and more intentionally about one’s legacy. On the hardest days hospice is about fighting tooth and nail to make lemonade from lemons, and at its best hospice makes everyone involved more alive and more human.