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.

Advertisements

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.

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.

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.

Damage Done By Bad Relationships Between Care Team and Patient — Partnering Lessons

A recent Israeli study of NICU rudeness by parents toward staff, reported in the New York Times, found:

[E]ven [ ] mild unpleasantness was enough to affect doctors’ and nurses’ medical skills. Individual performance and teamwork deteriorated to the point where diagnostic skills, procedural skills and team communication were impaired and medical errors were more likely, compared to control scenarios in which the mother would just say something general about being worried. The team’s ability to perform in critical medical situations with sick babies was affected for the rest of the day, the findings suggest.

and, as with a study focused on unpleasantness from medical staff:

Both studies were done in Israel, but the impact of rudeness does not seem to be culturally bound, a concern that was raised in the initial study design. “Israelis are not deemed to be the most polite people in the world; they say what’s on their mind,” Dr. Bamberger said. “The evidence suggests that even in a somewhat rude society, it still has an effect.”

I doubt that very few of us, when we are even a bit brittle with our caregiving team, realize that we may be impacting not only our own care, but those of others (who may indeed respond with additional rudeness.

It turns out that one approach to minimizing he effect on the care team is to provide training to raise the response threshold, such as by showing and categorizing pictures of angry faces.

To my mind, one of the great benefits of a patient partnering approach is that by humanizing patients and the team to each other, it makes it much less likely that rudeness or insensitivity will escalate.  Rather, the recipients will put the behavior in context, understand the overall situation and history, and respond in a lower key way.

Best of all, maybe folks will learn to use this as learning opportunities, making themselves vulnerable, and ultimately increasing their ability to partner.

It would be nice to think about how to change the intake and patient team process to acknowledge the stresses, and to create a culture in which honesty is requested and appreciated.  I suspect that much rudeness is rooted in powerlessness and fear that any serious attempt to obtain an improvement will be rebuffed.

As the Times article concludes:

But it’s critical for the members of the medical team to be aware of the risk and to acknowledge the problem, Dr. Riskin said, in order to help protect one another and deliver optimal care.

“We are human beings; we are affected by rudeness.”

 

 

New Hopkins YouTube Video, Patients on “What I Wish You Knew…Sharing Perspective from the Bedside,” Has Many Potential Uses

The new Hopkins video on the expectations of patients will be a powerful tool.  As the link says:

Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes. Respect, communication, and partnership. These wishes embody the building blocks of patient and family centered care and they serve as a daily reminder to ask ourselves as providers, are we meeting these simple needs to show we care?

As an Oncology Council member who was somewhat involved in the drafting of the list, it really struck me how simple, but massive, the patient “asks” are.  Respect, communication, and partnership.  Of course, the process of gathering these ideas was itself an important clarifying project.

It is my understanding that the video had been primarily conceptualized as a tool to educate doctors and staff.  I would add that, perhaps with some additional framing, it could have great use as a patient-education tool, with the goal of raising expectations among patients.  Such framing might start and end with the hospital making commitments to, and and asking for help from patients to achieve, those commitments, including of course, being explicit when the goals are not met.

We certainly spend time in waiting rooms, when we might be watching videos such as this.  Moreover, as more of the appointment notification and reminder system moves online, why not include links to video like this — ideally with mention of specific steps that patients with improvement ideas might take.