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.”



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.


What To Expect From Death Itself, and Opportunities for Patient Partnering

I remember vividly, from when my sister was dying back in 1997 in the second hospice in the world (link to my parents’ book full text),  how important it was to my mother that when asked what she feared most, she was able to say “the death rattle” and that Dr. Robert Twycross was able to reassure her both of the insignificance of the sound, and that he would in any event make sure that it did not occur.

So, I found a new article by Doctor Sara Manning Peskin in the New York Times particularly powerful and empowering. Under the headline The Symptoms of Dying, Dr Peskin first points out that as the “letting go” gets closer, deaths become more and more similar.

You and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

And, PLEASE PLEASE, note that last sentence.  Only a couple of days ago, at dinner at our retirement community, it turned out that several of our friends, informed, educated, with great access to services, still had no confidence that they would have a “good death.”

The article  (which is the first of two) then goes on to outline those various stages and symptoms the body may face: The Death Rattle, Air Hunger, and (the wrongly named) Terminal Agitation, and how they are addressed.

I guess the reason I find this relevant to patient partnering is that I think it is really important for anybody facing serious illness to be given information about all of this as soon as possible.  Having that on the table — or at least the general reassurance that it can all be managed when the time comes, will just make it far easier for an honest cooperative partnering discussion about whatever else needs to be engaged.  My guess is that most of those providing care will also become more relaxed when they know that patient and family want to know what will happen, and are willing to share their worries and have them addressed.

A Study of Why People Choose Assisted Suicide Has Important Lessons for Patient Partnering

An important article in the Washington Post should trigger some thoughts.  As the article explains:

But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising: The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.

The study, based on information from Canada’s University Health Network in Toronto, represents all 74 people who inquired about assistance in dying from March 2016 to March 2017. Most were white and were diagnosed with cancer or a neurological disorder like amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

“It’s what I call existential distress,” explained researcher Madeline Li, an associate professor at University of Toronto. “Their quality of life is not what they want. They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be.  .  .  .  One of the main things these patients bring up has to do with “autonomy.” It’s a broad philosophical concept that has to do with being able to make your own decisions, not being dependent on others, wanting to be able to enjoy the things you enjoy and wanting dignity.

The article cites several other studies that come to similar conclusions.  My first thoguht that the pain issue is easy to grasp, and a clear and dramatic focus of fear for anyone who thinks about it.  My own, perhaps overoptimistic view, is that it is a very rare case in which pain can not be satisfactorily managed provided you have access to the right experts.

But it is not the case that giving people a reason to want to live is viable for everyone.  It depends on the person, on what gives them identity, purpose and satisfaction.  If that is taken away, why on earth stay here, unless you are forced to.

When my sister, back in 1977, when given the news that (at 25) she was indeed dying of melanoma, and quickly, she asked our family physician what would happen if she asked for help dying.  His response has stayed with me all my life:  “That would mean we had failed you.”

That response works at the pain level, but it obviously works at the purpose and satisfaction level.  I would suggest that those dealing with those of us in decline should think about how to start conversations on what provides that satisfaction — and what might provide it as capacities decline.  Hopefully there is then time to learn to take please from things that have not previously given the same pleasure or purpose.

Indeed, the earlier the discussion starts, the better, and it should not be put off until the only short term outcome is death.


The Implications of Teaching Death Ed in Schools

A recent article by Jessica Nutik Zitter in the New York Times discusses the begining of what could become a trend to engage students with issues of death and dying during high school.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life.  .  .  .

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.  .  .  .

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

After teaching the kids how to play ” Go Wish” a card game designed to help bring out the students own preferences:

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.

Let me suggest that this is perhaps the very best way to encourage patient partnering, not just at the end of life, but throughout it.  Those who take “death ed,” will have had experience talking about the realities and about choices from an early age.  They will have considered values and the different roles of health professionals, the family and the patient.  They will be more willing to ask questions (at any age), to empower others to ask questions, and to object when those questions are not appropriately responded to.  I suspect that in many families the students will end up as the facilitators of these difficult conversations because others do not yet have the skills to start them.

I would love to see some follow up studies of those who take these classes and whether they become better at communicating with their own medical professionals, even in the short term.

I would also like to see hospitals and clinics seeing it as part of their mission to expand these kind of discussions into a wide variety of institutions.  I would only also emphasize that it would be a massive lost opportunity if the discussion was limited to the death process.  The truth is that all the same issues lurk in many health processes.  It is just that the issues are much starker when death is on the table.