Nyt article on “Not The Good Death We Were Promised”

A wonderful piece in the New York Times, under above heading, draws timely attention to the inadequacies of the current delivery of hospice service.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

But:

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

 

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

The thought terrifies all of us facing end of life.  I still believe that such an end is utterly unnecessary, and that it occurs points to multiple failures in the system.  And, this is even scarier:

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

Without getting into the specifics of pain relief, or the complex incentives in the capitation payment system, let me suggest that the earlier the partnering team discusses all the options, and the more patient, family, and team, make affirmative choices between hospices, based in part on this government data, on whether certain steps were followed, the pressures for quality to increase.  I would go further and say that any hospice for which this data is not available, for whatever reason, is just off the list.

There were also some great letters in response to the article.

 

 

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Using Tools Like Election Prediction Visualizations to Empower Patient Discussions

On a great day last week, one little bit of good news, the icing on the cake, was the New York Times Election Needle, a visual display that showed not only the most likely outcome, but the confidence level in the outcome.

needle

Imagine a medical staffer being able to discuss a similar graphic showing anticipated outcomes for no treatment, for particular treatments, etc., and the confidence level shown being of an appropriate measure of certainty.

The point is that this display of data is the beginning of the discussion, not the end.  Right now the discussion is largely non-statistical, often adding to the fear.  Remember too, that more and more people are acquiring the confidence to talk about numbers in this way, if on by reading the ever more popular fivethirtyeight.com..

To do this would require aggregation of outcome and treatment data — insurance companies already get most of this, its just a political problem of organizing it, and he obvious place to start is Medicare.

 

p.s. On twitter, one reader became so ense watching the changes update, that they tweeted that on their gravestone, it should read:  “He’s here because of the New York Times election needle.”

 

 

NYT Article on Doctor Burnout Misses the Role of Patient Partnering

An interesting article in the Times on physician burnout collects the data the damage done to patients and does an excellent jo pointing out the need for institutional change rather than wedding out those who suffer burnout.

“The solution is not to weed out the ones who don’t care, but to support the large number of physicians who are deeply invested and have the capacity to provide excellent care, but lose that capacity over time,” Dr. Schonfeld said. “Physicians enter medical school deeply committed to the field, they come with the desire to be empathic and compassionate, if we just create a system that nurtures what they come with then we will have less burnout and higher quality care.”

It should not be the doctor’s responsibility to feel that “if I’m just more mindful, if I just exercise more or do it better or more consistently, all will be well, and I shouldn’t be feeling burned out or exhausted,” Dr. McClafferty said.

The fact that nearly half of physicians and over 50 percent of trainees experience burnout at some point “shows that it is not predominantly an individual deficit, but an organizational and system problem,” Dr. Schonfeld said

“If you’re my physician,” Dr. McClafferty said, “I want you to be in good shape mentally, physically and emotionally, so you can be really successful at helping me.”

All dead on, and very important. But, I would urge that building institutional structures that encourage patients to want to “take care” of our doctors could have a huge important.  Most of us are deeply grateful to our doctors — indeed to all the medical staff — and the best way to show that is to even just try to take care of our doctors.  I remember one of my doctors, when I gave her a copy of  new paper, said “I will put it on my self with the other gifts from patients.”  She was, I think, telling me how much she valued the gesture.  She did also promise to read the paper, saying that she liked to know what was going on in other fields.

I also try to engage my providers about things like the emotional difficulties of going from a massive crisis to a routine interaction.  I doubt it helps on the concrete level, but I hope it at least gives them permission to have emotions.

Above all, I suspect, conveying the sense of partnership, that we as patients take shared responsibility for decisions — both those that turn out well and those that turn out badly — helps reduce burnout.

Anyway, my overall point it is that is not just on the doctor and the institution, it is on all of us.

Politico Article on “Crisis” Facing Hospice Highlights Growth of Inpatient Hospice Deaths

A recent article in Politico under the provocative title Hospice in Crisis makes the case that changes in family structure, improved life expectancy, technology and expectations are creating problems for the hospice movement because the rigidity of the reimbursement system does not allow for flexible responses.  In particular, the article points to the increased recognition of the need for in-patient hospice care:

Some experts see promise in using more inpatient care, whether in a freestanding “hospice house”—a more formal and regulated setting for care—or a section of hospital or nursing home. Hospice houses are more common than they were 20 years ago, but they are still not the norm. By 2015, the proportion of deaths in America that took place under inpatient hospice care rose to 8 percent, from zero in 1999, according to research recently published in Health Affairs. With soup on the stove, cookie dough in the fridge, and places for those who do have family and friends to gather, such houses don’t feel institutional. Mostly they’re used for a brief stay to control a crisis, or for a few days of respite care for family caregivers. But some who have studied hospice extensively, like Elizabeth Bradley, a health policy expert who recently became president of Vassar College, say it’s worth thinking about how this inpatient setting can take on a bigger role, at least toward the end. “It makes a lot of sense,” she said. “It’s not home—but it’s homelike. And it’s set up to pass you through the end of life.”

For those unfamiliar with the minutiae of the payment structure, while the Medicare system does allow for higher payments for inpatient hospice, availability is strictly controlled, with a percentage of days cap, and situation eligibility requirements.

Personally, having seen the physical strain that the end-of-life process puts on family caregiving networks (if they even exist), I believe that in patient hospice should be much more readily available.

Nor do I accept the argument that because almost everyone says they want to die at home, this is the end of the matter.  I believe that many say this because they feel that being at home means that they will be back in control.  But that is as much a comment on the lack of control that patients feel and fear in hospital than the desire for home as a specific place.

Once we design inpatient hospice that gives control to the patient, I suspect that many more will choose that option.

 

Guest Blog From Jill Harrison of Planetree on PCORI Research Participation Toolkit — The Time Has Come!

Editor’s Note: Thanks Jill for all your work on this project:

In the two years spanning Planetree’s project to understand how patient-family advisory councils (PFACs) engage in research, we have come to understand some of the key barriers experienced by patients and family members.  This project, which was funded by an Engagement Award through the Patient-Centered Outcomes Research Institute (www.pcori.org) involved focus groups with more than 21 PFACs around the country in a variety of healthcare settings (ie.- hospitals, nursing homes, drug rehab treatment centers, behavioral health communities, outpatient surgery centers, etc.).

What we learned is that patients and families still exist on the periphery of healthcare research.  That is, research undertaken to improve their lives, decision making, and health outcomes is often inaccessible to them.  Published research is made available through subscriptions to medical journals that are not affordable for individual consumers.  For example, one patient described finding a research article that she thought could help her understand her treatment options, only to discover that she was unable to see more than the abstract.  “If I wanted to read the entire thing, which I did….it was going to cost me $49 to buy it.  I don’t have that kind of money.”

When consumers were able to access publicly available research findings, they described being overwhelmed with jargon and statistical analyses that were difficult to understand.  “Maybe there should be some kind of summary for patients that tells us what the research was about and how we can use the information,” suggested a patient.  Some funding agencies, such as PCORI, and research journals are starting to require consumer-friendly summaries from researchers, but they are still the exception, rather than an industry rule.  PCORI is focused on supporting “research done differently.”  Patients and families in our project agree that the time has come.

Note:  Well said.

A Toolkit for Patient Involvement in Research

Plantree has just released a very nice toolkit for PFACS and others who want to increase patient engagement in research at all levels.  Here is the link.

Here is the table of contents:

toc

It is just so clear to me that research that includes the patient perspective will be far better — if only because it will help ensue that the outcomes measured are those that matter to patients as well as reserchers.

Disclosure, I helped and get an out-of-date photo in it!

Wrap Around Care and Right to Choose

A lovely NYT article by Jessica Nutik Zitter, headed Should I Help My Patients Die? gives a whole new, to me at least, perspective on the relationship between comprehensive care and end of life choice.  As a palliative care doctor in  state that allows, with multiple protections, assistance in the end of life process, she tells of this referral:

This first patient of mine was not a simple case. When I walked into his room, he glared at me. “Are you here to help me with this aid-in-dying thing?” he asked. He was in his early 60s, thin and tired, but in no obvious distress. From my read of his chart, he met all criteria to qualify. Terminal illness, decision-making capacity, ability to self-administer the medications. And he had made the requisite first request for the drugs two weeks earlier, as procedure dictates.

When I asked why he wanted to end his life early, he shrugged. “I’m just sick of living.” I asked about any symptoms that might lie behind his request: unrelenting pain, nausea, shortness of breath. He denied them all. In palliative care, we are taught that suffering can take many forms besides the physical. I probed further and the floodgates opened.

He felt abandoned by his sister. She cared only about his Social Security payments, he said, and had gone AWOL now that the checks were being mailed to her house. Their love-hate relationship spanned decades, and they were now on the outs. His despair had given way to rage.

“Let’s just end this,” he said. “I’m fed up with my lousy life.” He really didn’t care, he added, that his sister opposed his decision.

His request appeared to stem from a deep family wound, not his terminal illness. I felt he wanted to punish his sister, and he had found a way to do it.

At our second meeting, with more trust established, he issued a sob, almost a keening. He felt terrified and powerless, he said. He didn’t want to live this way anymore.

I understood. I could imagine my own distress in his condition — being shuttled like a bag of bones between the nursing home and the hospital. It was his legal right to request this intervention from me. But given how uncomfortable I was feeling, was it my right to say no?

In the end, the patient agrees to try an anti-depressant, and dies three moths later in a nursing home.

But the real reasons for the patient’s despair are not medical, not pain, but psychosocial and emotional, with strong legal and financial elements.  These were needs that the system, notwithstanding our growing understanding of the need for multi-faceted comprehensive care, is just not yet able to provide.

This leads me to want to put the question much more starkly:

Do we have the right to force people so stay alive when we are unable to give them what thy need to have hope and meaning in their lives?

In terms of our understanding what the above described patient needs, take a look at this graphic from the recent NQF document, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care

advanced-illness-care-graphic-1016-01_fotor

I encourage a look at the full paper linked above. (This link is to my summary)  Disclosure: I provided input).

When you look at all these areas, and the much more detailed descriptions in the full paper, I would suggest you realize how far we are from meeting the needs, and therefore how inappropriate it is to force people to stay alive and suffer needlessly.  At least in the enlightened states we understand this with respect to being pain free.  How about for the other needs?

P.S.  The importance of this issue is highlighted from this study from Canada, as reported in the Washington Post, finding that the majority of those who wanted to end their lives medically were driven by psychological suffering, rather than physical suffering.