Equity at the end of life

Every “health care consumer” has a human right to die in peace.

Ellen [not her real name] came to the ER septic, via ambulance, with no advance directives. Her daughter didn’t know what she didn’t know, but ultimately learned that this would be the last stay.

Each day into her stay, her docs presumed that the family wanted to continue antibiotics, because no one said otherwise. They never asked, and the family didn’t realize that it was a choice. A meeting of the minds took days.

Ellen was a fighter and never had the thought that she was dying. Her needs were too complex to contemplate a home transfer. Distant family called to say goodbye, and broached hospice, but the exhausted relatives on the scene were unsure of their course of action.

Finally, a local family friend explained that Ellen could be transferred to a quiet place, with all the morphine she needed, with no more antibiotics or beeping machines, at no extra charge. Ellen died there two days later. However, she was within a whisker of several months of personal and family agony at a rehab facility.

Stories like this are commonplace, and unless someone knowledgeable and committed intervenes, they usually end with unnecessary suffering. Money is often not the issue; it’s about the best setting for care.

It is tempting to believe that more public education about end-of-life options will improve comfort at the end of life. However, media coverage of the move toward home deaths often implies that choice comes with months or years of suffering with no way to relieve it.

Absent knowledge to the contrary, family and friends often presume that wherever a person is, is where they must stay. End of life paths are littered with the learned helplessness of ignorance, compounded by exhaustion, financial stress, and family dynamics.

Few laypeople understand that Death with Dignity [active euthanasia] laws have nothing to do with titrating meds to full comfort, withdrawing aggressive therapy, or just letting go of the idea of “getting better.” Nor do they understand that enrolling in hospice is not a prerequisite for any of these things.

The overworked, fragmented medical community seldom directly challenges this fatalistic quagmire. Even hospice staff answer to protocols that are informed by perverse financial incentives and inconsistent law, and are more about treading water than the death most wished for.

Thus, hospice staff working in the home may scoop up morphine at end of shift, suggest that the family is incapable of administering it, or present a scary overdose scenario. Staff or policy may disparage or simply never broach the option to stop measuring doses, even given no hope of meaningful improvement.

Many families do not even understand that a hospice’s religious affiliation or health system ties can make a material difference to their loved one’s care.

It isn’t simply about “winding down.” The packaged managed care programs that suggest the living “talk about their wishes” can lull people into thinking it’s 0 or 60 — that once someone decides on 0, nature can take its dignified, peaceful course with no elbow grease required. Real life is often different. An advance directive means nothing if families don’t both own and operate it.

The “don’t ask, don’t tell” procedure that many families do manage, when there is morphine and a willing caregiver at hand, is largely a secret code unknown to those who need it the most. Yet it is really pretty simple: we all need to share with each other what our definition of “quality living” is, and what to do when it’s no longer possible.

“We treat our pets better,” many murmur, but the humanity we tell ourselves we should apply to death most of all, seldom peeks out at an institutional level, only in quiet moments when the right people understand each other.

If we don’t talk about it, if we don’t teach about it, if we don’t reach for the best death for everyone as that person judges it, held apart from politics and “the health system,” it will be the beeping machines or our painful fever dreams playing us out, instead of the music, soothing voices, and chirping birds for which we hope.