Planetree Tool to Explain and Invite Patient Partnering Published in BMJ

The BMJ has just published, as a response to a British Medical Journal editorial, An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage.

This short document, of which I am listed as a co-author, explains the concept of patient engaged care, describes and briefly summarizes the Planetree – National Academy of Medicine framework synthesis of the research into the impact of this approach, and perhaps most importantly, then specifically welcomes and invites patients to become engaged and partnering team members.  (Note that my blog, attempting to summarize the very rich and detailed original Planetree-NAM paper, into which I had some input, is here.)

The BMJ response includes our offered model “Dear Patients & Families” letter, which could be used by medical institutions to explain, welcome and support full engaged participation.

For example, it references and summarizes the research as follows:

The good news is that research shows that patient and family engaged care leads to better relationships between you and your healthcare providers. It helps keeps patients safe. It reduces healthcare costs and keeps people from being unnecessarily readmitted to the hospital. Patient and family engaged care makes healthcare staff feel more connected to the work they do, which makes for a better experience for everyone.

Some of its specific invitations  and suggestions to patients are as follows:

  • On your next visit to your healthcare provider, ask them if they have seen the framework for patient and family engaged care. If not, direct them here: https://nam.edu/pfec.
  • Ask your healthcare provider if there is a way for you to be involved in improving care. For example, ask if they have a patient-family advisory council.
  • Ask to be part of the organization’s leadership or government team. Ask if patients are included as board members, for example.
  • Ask to be with your loved one at all times, if they want that. Question why there are restrictions to visiting patients. If having visitors is not beneficial to your healing process, enlist the support of your care team to set parameters for guests.
  • Ask that a Care Partner or family member be present and engaged for all conversations about your health.
  • State your feelings. They matter just as much as your physical condition.
  • Get involved in research. Ask about how your condition is being studied and how you can help.
  • Let your care team know how you like to receive information.
  • Ask to see and contribute to your medical record. If you don’t understand what you read in your medical record, ask questions until you do.
  • Tell your care provider what your health goals are – in your own terms (for instance, being able to walk up a flight of stairs, being able to play with your grandchildren without getting winded, etc.)
  • Come to doctor’s appointments prepared. Bring a notepad with questions, your medication list and any other pertinent personal healthcare information.
  • Create a medical biography about yourself. What conditions and medications have you had in the past? What are you currently experiencing? What are your goals for the future?
  • Act like you belong. Be a teammate, not a subject.

I think the last one, “Act like you belong. Be a teammate, not a subject,” sums the whole approach up perfectly.

I very much hope that medical institutions will want to include this letter in their intake, on-boarding process for new patients, and to encourage staff to use its suggestions as a framework for discussions with patients about a team approach and its specifics. It, together with the underlying NAM framework, could also be an excellent too for staff training at all levels on how not just to have an engagement discussion, but to make all discussions team discussions.

If this approach because a standard in most institutions, then we will truly be on the way way to a greatly improved system.

P.S. Working with Planetree on this has been a great honor and opportunity.

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A Patient Partnering Perspective From the London Tower Fire

A general practitioner from the neighborhood near the tower, Ahmed Kazmi, wrote this on the British Medical Journal Blog to describe his visit to an already well-staffed community center:

As a doctor I felt slightly redundant. The centres were very well staffed as so many doctors and nurses had volunteered. I sat down on the floor and played with some children. I didn’t use my stethoscope those hours I was at the centre, but I still feel I was a doctor. I think that sometimes empathy and witnessing someone’s grief are as important a part of our role as procedures or prescribing.

He also noted:

.  .  .  A group of young black Muslim boys, who were fasting themselves, walked around with jumbo pizzas offering everyone slices. A group of ladies arrived to offer face painting for the children.  .  .  It was striking how all of the usual prejudices or divisions, which so frequently surface, were all suspended. People from all walks of life were empathetic and loving to each other. For a period at least people stopped being black, white, Muslim etc and were just “human.” If this type of unity is possible in times of tragedy, I think it is realistic to aim for it all the time.

Sometimes presence and connection is the best, or even the only, healing.  And part of partnering is developing the ability to sense the needs of the other, and find a way to help meet them.  It is also not just about the individual “patient” but of the whole community and environment.  Thank you Dr. Kazmi.

 

 

Do We Need Specialists Within Specialties Focused On Particular Life Goals For Those Dealing With Serious Illnesses?

Here is an idea.

Particularly with long term diseases, the treatments chosen and needed may well very significantly by values and life choices.  For example, there is the dimension of pain versus awareness and communication capacity.  There is the dimension of quality of life versus quantity of life.

Moreover, as we get to understand the choices we have to make, the question of what would provide quality starts to become more and more nuanced, regardless indeed of where they put themselves on the quality/quantity continuum.

For example, for one one person it might mean staying physically active for a long time.  For another it might mean being mentally active.  For another staying emotionally connected.  For yet another being productive (getting things finished.)  For another it might mean being happy.

As of now, those specializing in serious diseases are better and better at finding our what people want.  And specific disease experts are getting better and better at treating particular problems.

But since some people with, for example, a potentially painful cancer care most about staying active physically, and others about being intellectually productive, maybe they need different treatments, and perhaps, as the science develops, different experts with different knowledge and connection to emerging research.  (To a certain extent, the development of an expertise in palliative care is a recognition of these insights, although to the general public, that is generally associated with pain, rather than other goals.)

Similarly, for one person with Parkinson’s, the goal might be to be able to keep writing.  For another it might be keeping out of pain.  Again not only might the treatment need to  be different, but so ultimately might be the needed expertise.

I realize that creating such new kinds of specialists runs the risk of an ever greater fragmentation of care.  But surely the right way to think of this is to realize that as the risk of fragmentation becomes greater — as it will in any event — the need for coordination, navigation, management, and communication becomes greater.  That problem has to be solved anyway.

Moreover, at the risk of restating the obvious, the patient partner team approach helps guarantee that the patient articulates and communicates what they want — and then gets it.

 

The Great Research News About Impact of An Hallucinogen on Cancer Patient Depression and Anxiety Raises a Side Question About Extent of the Problem and the Diagnostic Process

I suspect that the Internet is already abuzz about the study about high impact of careful single intervention use of Psilocybin on cancer patients suffering anxiety and depression (New York Times Report).

Psilocybin has been illegal in the United States for more than 40 years. But Mr. Mihai, who had just finished treatment for Stage 3 Hodgkin’s lymphoma, was participating in a study looking at whether the drug can reduce anxiety and depression in cancer patients. Throughout that eight-hour session, a psychiatrist and a social worker from NYU Langone Medical Center stayed by his side.

Published Thursday, the results from that study, and a similar small, controlled trial, were striking. About 80 percent of cancer patients showed clinically significant reductions in both psychological disorders, a response sustained some seven months after the single dose. Side effects were minimal.

But what surprises me from the article is the statement that:

Cancer-related psychological distress, which afflicts up to 40 percent of patients, can be resistant to conventional therapy. Mr. Mihai’s anxiety began when doctors finally told him he was in remission.

I went and looked at the abstract of the study linked to, and the relevant language is:

Interview-defined depression and anxiety is less common in patients with cancer than previously thought, although some combination of mood disorders occurs in 30-40% of patients in hospital settings without a significant difference between palliative-care and non-palliative-care settings.

The meta study used DSM or ICD criteria.

Frankly, as a long term patient who spends a lot of time in oncology waiting rooms, I find this low number impossible to believe, or rather it makes me deeply skeptical of the diagnostic process and criteria, at least as applied.

DSM criteria are described in general as follows:

Depressive disorders include disruptive mood dysregulation disorder, major depressive disorder (including major depressive episode), persistent depressive disorder (dysthymia), premenstrual dysphoric disorder, substance/medication-induced depressive disorder, depressive disorder due to another medical condition, other specified depressive disorder, and unspecified depressive disorder. Unlike in DSM-IV, this chapter “Depressive Disorders” has been separated from the previous chapter “Bipolar and Related Disorders.” The common feature of all of these disorders is the presence of sad, empty, or irritable mood, accompanied by somatic and cognitive changes that significantly affect the individual’s capacity to function. What differs among them are issues of duration, timing, or presumed etiology. (Bold and underline added.)

So, I suppose the key is “significantly affect the individual’s capacity to function.”  It may be, for example that impact on “function[ing] of depression is almost impossible to tease out for cancer patients whose capacity to function is already so impaired.  (One might, I suppose, see what happens by trying to treat it, but you have to have the diagnosis first).  I know that personally having a psychiatrist expert in serious illness and end of life issues has been life changing, precisely because she can help me work out what is from the cancer, what is from my physical and emotional reaction to my cancer and what is from broader issues.

It could also be that clinicians supervising hard-to-take, and hard-to observe interventions underestimate the effect of those interventions on us, or else they could not keep going day after day.  (By the way, I Learned recently that at Hopkins the people who do bone marrow aspirations are “on” for that task maximum a day a week.  More than that is considered too much stress.  I love the attention to the needs of all.)

For anxiety DSM says:

Anxiety disorders include disorders that share features of excessive fear and anxiety and related behavioral disturbances. Fear is the emotional response to real or perceived imminent threat, whereas anxiety is anticipation of future threat. Obviously, these two states overlap, but they also differ, with fear more often associated with surges of autonomic arousal necessary for fight or flight, thoughts of immediate danger, and escape behaviors, and anxiety more often associated with muscle tension and vigilance in preparation for future danger and cautious or avoidant behaviors. (Bold and underline added.)

I suspect that it all too easy for clinicians, consciously or more likely unconsciously, to decide that the patient is suffering rational fear, rather than “irrational” anxiety.

The bottom line is that the overall circumstances of cancer are likely to make diagnosis according to these criteria difficult if not impossible.  It is just all to easy to get the number down to 30 to 40%, when really we should see anxiety disorders and depression as prevalent in our population.

In any event, I would urge careful thought to how these issues are looked at in patients, and ultimately not restrict proven treatments to those paralyzed by the emotional impact.

In the long term we might be thinking about specialized criteria and diagnostic processes for those with cancer diagnosis, and rather than dealing with issues of labeling consider thinking about whether treatment would be helpful. (Actually this may be happening anyway.  I wonder what percentage of cancer patients are already getting anxiety or depression medication.)

p.s.  Deeply personal note:  As a patient, I certainly suffer various forms of anxiety and depression (personal health status reports here).  As an advocate and blogger, I feel much less of both when I am engaged, writing, talking, and thinking about this.  I also note that the great thing about blogging is that it gets you online and researching (as hopefully shown by the above.)  I would have been talking about the hallucinogen study anyway , but now maybe I actually have something worth saying. I would certainly prescribe advocacy as part of any treatment, had I prescribing authority.

 

NQF “Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care” Released

Today the National Quality Forum released its Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care. As the announcement says:

NQP’s Advanced Illness Care Action Team, which includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors, developed the issue brief. More than two dozen individuals and organizations that are leading robust initiatives to transform advanced illness care in the United States also provided input.

It is is a very rich document, with many insights and resources.  Rather than attempt to summarize it, I will instead list the lessons that I took from both the document and my participation as a patient voice in the process of bringing its ideas together.

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Should There Be a New Medical Role to Fill the Gap Between Specialists and PCPs for Those With Ongoing Serious Illness?

My doctors, nurses and primary care doctor are wonderful.

But I realize that I am asking them to do something impossible, to help with the day to day challenges to my body that may not be a direct part of my bone marrow cancer, but are deeply interrelated with it, with each providing the context for the other.

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