Advance Directives Look Completely Different to Patients and Treatment Actors – So Partner in the Design

I have come to realize that patients and actual treatment providers may be thinking very differently about advance directives, and that therefore it is particularly critical that these documents — or rather the templates that are used, be designed in close partnership. between patients and providers

For the providers, the question they face is usually very treatment specific — typically something like: “do I turn off this machine now?”

For patients, the issue presents very differently focused on particular anticipated circumstances: “what do I want done when I can not eat?”

So, look, for example,  at this question from the Maryland MOLST document.


While some of us may think this second way, I think most of us come at it rather from the direction of, “what do I do when then the pain becomes too much?”, or “how do I guarantee that I am not left unable to say that enough is enough?”

I totally understand that given that the role of the MOLST is to ensure that specific decisions are made in accordance with the patient wishes, that often those decisions are made under time and emotional pressure by first responders with limited training, such treatment specific instructions are needed.  Otherwise treatment will tend to continue, regardless of what the patient wants.

But, if you have ever tried filling out the MOLST, or I suspect equivalent documents in other states, you will find that you are constantly fighting its categories, and wanting to add more and more detail, when allowed.

Given these differences in perspective between patients and providers, let me suggest that we need software that walks a patient though questions, and based on those answers, generates the directive.

However, the questions must be structured the way the patient thinks, laying out circumstances, and offering choices.  The software then restructures those into a set of formal directions that are treatment specific, like in the MOLST. Obviously then the patient reads and signs thee derived directives document.

I hope it is obvious that such software needs, and accompanying materials, need to be developed in close partnership between providers and patients.






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 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.



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.


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

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 ( 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:


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!