My mother spent the last eight days of her life at the Collier Hospice Center. Our family was moved by the dignity that Collier staff provided everyone who participated in our mother’s final days. Five years later, I returned to reiterate that thanks and ask the care team how the way in which we die will impact how we will live tomorrow. My sister Pat and I met with Judith Kadlec-Fuller, Director of Patient Services and Dr. Shannon Ryan, Palliative Care Medical Director, at Collier Hospice Center
In medical school, Dr. Ryan was interested in the difference between treating people as “disease processes” versus a patient-centered focus on managing disease and distress. She became a family medicine physician, worked at Kaiser, developed an interest in geriatric care, and shifted to palliative care. “People exist in a context of family and community. Our focus on treating disease only and ignoring individual contexts sometimes hurts patients.” Hospice provides a different platform from which to make end of life decisions than traditional medicine requires.
Judy explained, “Seventy-five percent of people say they want to die at home, yet only twenty-five percent actually do.” Hospice can help realign people’s wishes with reality. Eighty percent of hospice patients remain in their homes because hospice support optimizes their ability to stay there. A typical at-home patient has a weekly visit from a nurse, three to five visits a week from a care assistant, and 24/7 phone access to a nurse. “Medicare pays us $165 a day for at-home care, versus $800 a day for inpatient care. They limit inpatient care to no more than twenty percent of our patients. It’s useful to have the inpatient option, but it’s not the core of our care model.” Judy believes that as palliative care and hospice care become better know, more people will choose palliative care.
Dr. Ryan added, “There’s a ground breaking study from Mass General Hospital that showed advanced cancer patients who had standard cancer treatment PLUS palliative care actually lived longer – not just had a better quality-of-live, they actually lived longer – than patients who underwent only standard treatment without palliative care.”
There are additional indicators that critical patients and their families suffer in other ways from medical treatment. Long-term ICU patients develop depression and PTSD. Families of patients who die in the ICU have higher levels of grief-related depression.
Judy explained, “When hospice started in this country, it was considered the last resort of cancer patients. Now 60% of our patients suffer other illnesses. Many are deteriorating chronic conditions. Too often, we have patients who come to hospice and die the same day. We can offer chronic patients benefits well before that time.”
Dr. Ryan sees increased exposure and acceptance as the key to more people considering, and selecting, hospice toward end of life. “Atul Gawande’s book, Being Mortal is doing so much for us. There is also discussion under ACA (Affordable Care Act) to compensate for end-of-life discussions. Right now, if they occur, they are on the doctor’s own time.
“Physicians have abdicated our responsibility to provide clear guidance. Malpractice and liability concerns cloud this. Families are put in places where they have to make difficult decisions. Sometimes they bully physicians when they reach an impasse. Younger people question every milligram of every medicine. I am for empowerment, but reading a WebMD article is not the equivalent of 40,000 hours of medical training. Physicians are seen as the public face of the healthcare problems in our country. Yet our judgment is increasingly questioned by algorithms about outcomes and cost-effectiveness.”
How will we live tomorrow?
“We will return to the day when people die at home. There will be more telemedicine to support it, but death will be more integrated into life. We see Hispanic families who care for their loved ones like you can’t believe. I envision more families caring that way.” – Judith Kadlec-Fuller
“We, as physicians, have propagated the myth that we are more in-charge than we are. We are going to see more patients and families involved in reaching consensus about end-of-life care. Caring for a patient is much more complex than treating a disease. Physicians will let go of some treatment in order to have a more satisfactory outcome overall. We say we want to die at home, yet we die in hospitals. Will we die in hospitals or will we die at home?” – Dr. Shannon Ryan