1. A stable place to reside: safe, clean, one place.  Can be someone’s home, an assisted living community, a room in a board and care center, or a skilled nursing facility.
2. 24hr/day caregivers: someone needs to be around the vast majority of the day and night; and when death becomes more imminent, then total 24hr/day caregiving support is a must.  Typically, these caregivers do not need to be medically trained personnel, but they do need to be comfortable caring for a sick person- i.e., administering medications, assisting with personal hygiene, etc…
3. Equipment: hospital bed, commode chair, shower chair, oxygen, walker, etc….
4. Medications to ensure comfort and knowledge about appropriate administration.
5. Regular visits by health care providers to reassess the patient’s condition and ensure symptoms are well managed. And to provide family support.
6. Emergency assistance: for questions, new or uncontrolled symptoms, or any change in condition.

When talking about end of life care in the US, one thing that often gets overlooked is that the vast majority of hospice care takes place at a patient’s/family’s home.  And while hospice agencies provide 3,4,5 and 6 services, they do not provide 1 and 2.

And this can be a huge problem.

Because the reality for many people is that they do not have the this type of support.  Which makes dying at home suboptimal or impossible.

An additional reality left out of this article is that while Medicare and most private insurance plans will pay for hospice services, they do not cover basic patient care (#1 and #2 above).  And contrary to what most people expect, the majority of Medicare supplemental insurance policies do not provide coverage for these services either.  Only exceptional long term care insurance policies or medical assistance does.  For patients who must go to a skilled nursing facility due to unstable home situations or inadequate support, this care (deemed ‘custodial care’) is not covered because it is not felt to be a ‘skilled service’.  This leaves patients in a very difficult position.

Mrs K’s family really wanted her to bring her home, but they were conflicted.  While family members were always with her 24hr/day, they had great concerns about their ability to properly care for her, even with hospice support.  They wondered whether a short term stay in a skilled nursing facility with rehab services could help her get stronger, to make caregiving a bit easier.

My bias is that her family was driven by two things:

I think our friend HOPE was rearing its head because it was quite doubtful if rehab would have significant impact on her functional state.  And I pointedly expressed concern that it was possible that not only would she not improve with rehab, but could decline precipitously at the facility.

But more importantly, her family’s greatest concern was that she not suffer.  Having her under the watchful eyes of the ‘trained staff’ in a nursing facility gave them security- that ‘everything’ possible would be done to ensure her comfort.

Since she was not imminently dying, and because she did not want to burden her family with significant medical debts, Mrs K gave in to her family’s wishes- and she was discharged to a skilled nursing facility.

A week later though, she was back in the hospital- weaker still, now with a fever and shortness of breath.  When Mrs K came into the ER she was too weak to talk with the providers, and her family while still not totally accepting her reality gave the go ahead for extensive work-up and interventions.

Soon thereafter, I had a long discussion with her family, and they reluctantly came to accept that Mrs K was now imminently dying.  They made the decision to shift to comfort focused care.  But unfortunately, at this point, she was so critically ill that getting her home was impossible.

She died in the hospital soon thereafter, with her large family at her side.

While there is a growing conversation in this country about how to provide more appropriate care for patients nearing end of life, the reality is that this is a complicated issue.  Financial issues often get in the way and these are not trivial concerns (custodial care costs in a nursing home can be more than $1000/day).

Remember hospitalizations are covered by medical insurance.  And while hospice support is a covered benefit by the majority of insurance providers, shifting to comfort focused care, transfers much of the cost of basic care onto the patient/family.  And this can be HUGE- not just in financial terms, but it also turns grieving family members into caregivers- which can be another source of suffering for patients and families.

So patients may end up at skilled nursing facilities getting ‘rehab’ as a necessary work around, in an attempt to help patients with few resources get care at the end of life.

Perhaps the real take home message should be that it’s time for our policy makers and health care funders to recognize that helping patients die is a skilled need, deserving of richer resources than are currently available.  And this warrants a more extensive conversation than what is currently ongoing.