- Jeanne Lee
Post 82: An Opinion Note - The Ugly and Beautiful Sides of Hospice
The discussion forums for the American Academy of Hospice and Palliative Medicine have recently been dominated by heated reactions to the recent New Yorker article "How Hospice Became a For-Profit Hustle."
I myself felt dismayed and disgusted as I read the extents to which we as human beings are capable of "leveraging" the fear and uncertainty of fellow human beings attempting to make the most of living while dying - and strategically taking advantage of our neighbor's misunderstandings and ignorance of the hospice system - to enroll them into hospice programs when their goals of care (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2) and/or medical situation are clearly not in line with those of the hospice philosophy, all in the name of increasing profits.
I realized, however, that I had heard occasional rumblings about hospice over the past decade-plus years. I suddenly remembered times when I had brushed aside certain comments made by colleagues ("I don't know why that nursing home patient is in hospice. His dementia seems stable.") and hearing but not truly listening to certain remarks made by people in the community ("There was a hospice nurse who came all the time to my mom's LTAC facility. She reminded me of a vulture, swooping in almost every day to try to push us into putting Mom in hospice.").
For a time, I naively thought that primarily people with a calling, or at least strong interest, would choose to work in a field that is rarely even mentioned in medical school or nursing school. This was especially naive thinking because it persisted despite my reading about private equity (PE) firms acquiring more and more hospice providers and the majority shifting from nonprofit to for-profit hospice agencies in the United States in the past decade.
I myself have been fortunate to work with hospice liaisons and team members passionate about their work, going to great lengths and thinking far outside the box to obtain patients and family members the support they needed to maximize the quality of each of their days. "My husband had affairs with almost all his secretaries," the elderly woman with severely advanced lung disease told me as I attempted to determine if her goals were in line with admission into the hospital versus in line with returning home to continue under the care of her hospice medical team. Looking comfortable and enjoying my attention, she continued, "The last time I had sex was 1988 (it was now well over two decades past 1988), but you know what? The hospice nurse surprised me with a gift! She got me a vibrator and taught me how to use it."
I do believe in the hospice philosophy - that people trying to cope with worsening strength, worsening weight, increased loss of independence, increased loss of identity, and increased loss of spiritual health should be able to receive the maximum amount of physical, social, emotional, and spiritual support possible from experts in a variety of fields (social worker, chaplain, nurse, home aid, physician, and also if possible, physical therapist, nutritionist, pharmacist, counselor, music therapist, art therapist...).
(I write about the positive aspects of hospice medical support around which many people have misconceptions in Post 56: Debunking Common Myths about Hospice - Part 1 of 2 and Post 57: Debunking Common Myths about Hospice - Part 2 of 2.)
However, I also agree that the hospice program as it is executed currently has room for improvement. Based on questions raised during family meetings in the past decade, the following are my initial thoughts on where I believe patients and family members would most appreciate change.
"Prognosis of six months or less" if we allow nature to take its course is a requirement for hospice medical eligibility. However, this concrete number can be scary for many and feel excessively restrictive to others. "I don't need a number hanging over my head."
From the physician standpoint, no human being can accurately predict the life expectancy of another. With experience, training, and knowledge from studies, doctors could provide a reasonable estimate within a range ("weeks to months" or "months to years"). As a patient approaches closer and closer to death, doctors can narrow that range ("hours to days" or "days to limited weeks"). If a person with severe dementia is bedbound and spoon fed and intermittently declining rather than rapidly declining, continuing to live beyond month six with the very dedicated care of their caregiver and hospice team, hospice providers should be able to feel comfortable that they can re-certify this patient to remain in their hospice program, especially if the family's goals are to keep their loved one comfortable at home without seeking studies or tests in clinics or emergency rooms. Hospice providers should be able to feel professionally "safe" when offering to continue support for this caregiver and patient without fear of being audited for potential fraud for keeping a patient who is living beyond the Medicare guidelines of "six months."
Perhaps we let go of the prognostic number entirely. Perhaps we solely use instead an eligibility criteria combination consisting of a patient's medical diagnoses, number of recurrent hospitalizations, decline in the ability to perform day to day self care activities (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3), weight loss (read Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3), and their priorities and goals (read Post 54: Why Should I Care about My "Goals of Care?").
Too often, family members consider hospice support "too late" to really utilize the entirety of the hospice support system; this may be when a loved one is already actively dying within hours to days in the hospital or intensive care unit (ICU). However, sometimes a healthcare provider may bring up hospice medical support earlier on when one has months rather than hours of anticipated life expectancy. In these instances, patients and family members may consider hospice support, and I frequently hear two questions: "Why doesn't this hospice agency nor that hospice agency offer physical therapy? Trying to maintain strength, balance, and some independence for as long as possible is quality of life" and "Why doesn't this hospice agency nor that hospice agency have a nutritionist on board? My loved one's tastes, appetite, and swallowing ability have changed so much as their illness has worsened. Getting guidance on what I can do to make eating easier and more enjoyable for them is quality of life."
I think that payment to hospice providers should be amended so that hospice providers are incentivized to provide physical therapy and nutrition optimization assistance when these are in line with a person's goals.
Finally, according to the Family Caregiver Alliance, unpaid caregivers (families and friends) provided $470 billion worth of caregiving in 2013, exceeding the value of paid caregiving and total Medicaid spending that same year. I would suspect the number has climbed much higher this decade, as it had in previous decades.
The healthcare system, the pillars of our society, our cultural expectations, the Hospice Medicare Benefit - something or many things - must change so that our unpaid caregivers at home (husbands, wives, brothers, sisters, adult children, adult grandchildren, neighbors, ex-spouses, stepchildren, nieces, nephews, "family by choice") are given the financial aid, transportation assistance, and informal nursing care training required for caregivers to be able to care for their vulnerable loved ones with confidence and patience rather than overwhelm, burden, and burnout.
I am not an economist nor policymaker, so I do not have proposals on how changes with hospice delivery should be made. I can attest that there are people (all over this country!) passionate about getting quality care (within the current constraints of services hospice is allowed to deliver) to patients who are truly eligible as the current hospice eligibility rules stand; not all hospices are for-profit hustles.