Monday, January 8, 2018

Sadly, not rare - #hospicefail

How hospice care should end

How hospice care ends too often

There's been a lot of good discussion in several Facebook groups concerning an article in the New York Times, about how a hospice and its staff completely dropped the ball and failed a patient and family at their most critical and vulnerable time.

"This was not the good death we were promised," the firsthand account by Karen Brown, falls on the heals of a similar story that appeared in Time magazine last October, "No one is coming - hospices abandon patients at death's door." 

The usual suspects trotted out their tut-tuts, offering useless thoughts and prayers along with empty assurances that the cases were rare exceptions. I've also read many comments from hospice staff that these kinds of failures just don't happen at their agencies.

Color me skeptical.

In my experience, the goals and expectations for each case - to die peacefully at home - were reasonable and achievable with competent staff and a supportive agency. 

Also in my experience, and contrary to the trade group's happy talk and the heads-in-sand perspective of those who are simply shocked that such failures even happen, the sad reality is that all too often staff are not competent in anticipating, identifying, and managing the escalating symptoms of advanced disease in the final approach to end of life. 

Just as often, staff with sufficient skills are not well supported by their agencies, and/or their skills are not matched by those of their colleagues. 

Hospice care is a team sport. Training and experience are essential, and the players riding the bench need to be just as ready to step up when the moment calls as the ones on the field during normal Monday through Friday business hours.

The weakest link in hospice is nursing staff. The biggest challenge is finding skilled nurses with the right emotional temperament, and providing the kind of support that enables them to do their work and makes them want to stay.

The biggest failing among hospice agencies is not building or maintaining a culture that values learning and collaboration. The most common mode of hospice agency operations is "hair on fire," where the latest crisis gets the most attention, staff lurch from crisis to crisis, and everyone else falls through the cracks - like in these accounts.

I've also read comments in social media saying the families had unrealistic expectations, pointing to Karen Brown's question why the hospice nurse who responded to their home did not also bring along emergency medications (nurses do not transport medications, especially controlled substances).

I call that blaming the victim.

The bottom line is that even highly-motivated, educated, and resource-deep families are woefully unprepared to meet the challenges of caring for a loved one at home during the worst time of their lives.

It's most certainly do-able. I've done it, and have seen it done, plenty of times.

I don't tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories. I say instead that we're going to do all we can to make the best of a difficult situation, because that's what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.

A plane landing is simply the unremarkable conclusion to a well-executed flight plan carried out by a skilled and experienced crew.

The death of someone on hospice care at home, regardless of cause, should just be the final moment of a serious illness that's been well-managed by a team and family.

There's an awful lot more to this subject, and I'm going to pick it apart in future posts. It's too important.

PS - This post is dedicated to my dear Facebook friend, Megan, along with her dad and family.


  1. Patients in hospice don't have predictable course of dying more often than not. Hospices do not test for blood and see how the diseases are progressing, and therefore are much more uncertain about when and how the disease process is likely to take. We have to educate families and patients about what *might* come about in the process of dying, and insure that we have a plan in case various events happen.

    Unfortunately, people can assume that the dying is on "schedule" leading to the assumption that the patient's needs have been met through coordination of medication (not thinking that the patient's medication needs and/or psychosocial needs may change dramatically in course of active dying.)

    The goals of care, to die "peacefully" at home and so on, may be met in the eyes of the staff but falling far short of what patients/families hope for. Aspects of care are more specific--for example, whether medication sufficed or did not suffice; and yet amorphous (whether clinician was therapeutically helpful or not). We have to develop and agree upon goals that are reasonable and measurable.

    It's not fair to say that people are generally ignorant of how to assess people's needs and the symptoms/signs of changes in the patients' needs.

    1. I've encountered too many hospice staff, particularly nurses, who are not clinically competent; and I've also seen firsthand how agencies fail to adequately prepare and support staff.

      Karen Brown's story, and others, underscore this point.

      Hospice is a clinical specialty, no different in that regard than brain surgery or delivering babies. Patients with advanced disease at end of life are "beyond intensive care," that is, their clinical needs are significant, and the measures we use to control symptoms include powerful drugs with serious adverse effects.

      I appreciate your comments, but strongly disagree.