The Wall Street Journal had a February 19th front-page article on how much Hospice is costing Medicare with the emphasis being on those patients who go into home-based Hospice care and stay there for prolonged periods. While many of that group have Alzheimer's or other dementing diseases, others have chronic obstructive pulmonary disease (COPD, e.g., emphysema), heart failure or cancer. The average time spent on Hospice in 2013 alone was 93.2 days for people with Alzheimer's and similar dementias and they consumed 22% of the total Medicare spent on End-of-life (EOL) care that year.
The statistics in the article were striking: over an eight-year period (2005-2013) 107,000 patients had been on Hospice for much longer, close to a thousand days. That's a very small subset of all those who had sought out Hospice care during that timeframe, 1.3%, but that relatively small number of patients cost Medicare a huge amount, 14% of its total dollars spent on Hospice in that timeframe.
The program itself was originally set up for those whose physicians could certify were terminal, within six months of dying. The overall Medicare Hospice expense total in 2013 was roughly $15 billion and the WSJ's data references a study stating that that care, at least for those who did not have cancer, actually cost Medicare 19% more than for similar patients who did not seek out Hospice care.
That's especially true for those who have dementia, but other chronic conditions (where the time to death is less predictable than it often is for patients with cancer) clearly play a role also.
As I was not surprised there's often another side of the picture. I have had two examples in my extended family; one involving Paul, my son-in-law and the other Lynnette, my wife. My son-in-law's father had Lyme disease with significant brain involvement. He went from being a distinguished systems engineer to needing help with many of the activities of daily life. It was a long time before his family was able to get him on home Hospice; when they finally did, my son-in-law said to me, "it was the difference between day and night." The family really appreciated the care given to him during his final weeks.
Recently my wife had a major stroke and lived one week, one hour and seven minutes after the onset of the bleed into her brain. I had seen her stumble in our bedroom, realized she was unable to get up, carried her to our bed and called 911. We went from ambulance to a local hospital where CT scanner which showed a considerable area of bleeding in her brain. She was immediately moved to a bigger hospital where a neurosurgeon was available. He ordered a second CT scan which showed even more bleeding. All the things he could do would come with consequences she had always said she would not want to live with.
I was her health care surrogate and carried out her oft-expressed wishes, rejecting the surgery, so she went, several days later, to Hospice at a third hospital. The care there was exemplary, but this was clearly to be short-term, inpatient Hospice.
So when I read the WSJ article, I did so with a jaundiced eye, not from the viewpoint of a physician or a taxpayer, but from that of a family member who had experienced the positive side of Hospice.
The issue for me, as it was for my wife, is quality of life. That's a hard subject for many of us to discuss, but I think it's crucial. We had had those talks repeatedly over the past five or six years and both of us knew what the other wanted.
I don't have answer for others, but I urge you to think about the subject, talk about it with your spouse, significant other and children, whoever might be asked to make a choice for you if you are unable to make it yourself.
There was the other aspect we hadn't fully explored. Neither my daughter, who would have been the one to make choices for me if my wife was unable to do so, or a nephew, who would have been my wife's secondary decision maker, had been party to our discussions.
So what would have happened if Lynn and I had been in a car crash, had both been severely injured and our alternate health care surrogates had to make those tough choices?
I don't know the answer, but it's clear to me now that EOL discussions should involve more than you and your spouse or significant other.
It's also clear that neither Lynn nor I would have wanted prolonged home Hospice, but would have (I did at least) really appreciated its availability for relatively short-term care, whether in our home or, as it turned out in a hospital setting. You may or may not feel the same way.
Please think of having those talks now with whomever in your family might be called upon to choose for you.
This blog impressed me with the urgency to make EOL decisions sooner than later. Having just witnessed a relative's two-months on life supports, I understand how vital it is to make our choices clear to those who will be the ultimate decision makers. Hospice fills an important role. Thank you for a timely, educational post.