A Decision Aid: Goals of Care for Patients with Dementia #SDM

There was an excellent paper in JAMA Internal Medicine (FULL TEXT), "Effect of the Goals of Care Intervention for Advanced Dementia" that was ePublished in November and is now in print. Dr Laura Hanson, at the University of North Carolina at Chapel Hill, and her colleagues were, in short, exploring the following:

Question  Can a decision aid intervention about goals of care improve communication, decision-making, and palliative care for patients with advanced dementia?

Findings  In this randomized trial of 302 nursing home residents with advanced dementia, family decision makers reported better end-of-life communication with clinicians. Clinicians were more likely to address palliative care in treatment plans, use Medical Orders for Scope of Treatment, and less likely to send patients to the hospital.

Meaning  The goals of care decision aid intervention is effective in improving quality of communication, palliative care treatment plans, and reducing hospitalization rates for nursing home residents with advanced dementia.

I wrote Dr Hanson who kindly provided a link to their decision aid video. It is 21 minutes, so the best way to use it might be to email it or set up a computer for family members so they can view it when a patient is admitted to a long term care facility.

 

This video has been added to the Hands On Aids part of the Less is More Medicine site, where you will find lots of other shared decision-making tools.

 

Hanson LC, Zimmerman S, Song M-K, Lin F-C, Rosemond C, Carey TS, et al. Effect of the Goals of Care Intervention for Advanced Dementia. JAMA Internal Medicine. 2017; 177(1):24-31

 

Source: https://www.med.unc.edu/pcare/resources/go...

Minimally disruptive medicine: Effective Care that Fits Workshop SEPT 2016

I read the fantastic Minimally Disruptive Medicine (MDM) Blog and want to bring your attention to the Mayo Clinic KER Unit MDM event, coming soon:

From the MDM site:

Click on the image to find out more about the Minimally Disruptive Medicine Workshop.

Minimally disruptive medicine (MDM) seeks to advance patient goals for health, health care, and life, using effective care programs designed and implemented in a manner that respects the capacity of patients and caregivers and minimizes the burden of treatment – the healthcare footprint – the care program imposes on their lives.

This site is maintained by researchers at the KER UNIT who are part of an international research team that is working on understanding and implementing MDM across the world.

Some introductions to MDM:
From the peer-reviewed press
From the medical press
From the lay press
From Wikipedia
From a presentation (video) 
From a radio interview (audio)
Complexity Care Model article

 


For more events related to "Less is More," "Choosing Wisely," "Preventing Overdiagnosis," "Shared Decision-Making," etc, go here.

End of Life Wishes: a (simple) Letter Project

The Stanford Medicine Letter Project idea is simple:

Write a letter that explains what matters most to you at the end of your life, how medical decisions should be made, and who can make decisions for you if you are unable. A formal advance directive can be intimidating to some. This is a straightforward way to make your wishes known.

Every adult should complete advance directives..... and most would, if they could! Sadly, many take one look at the advance directive form and give up after the first two minutes of trying to decipher the medico-legal jargon.

You can use their PDF template to start or fill out the form on the website and print or email the result for yourself, your family, and your physician(s).

In my work in Palliative Care, I continue to be amazed by the number of people I meet who have never thought or talked about dying. It is a natural part of life, guaranteed. It is one of the only sure things that we all have in common. And yet, so few people feel comfortable discussing it.

I am also amazed at the number of people who have thought about it extensively , have clear wishes, but have never made them known.

Don't wait! Talk to your family and consider this simple tool to share your thoughts and wishes.

Source: https://www.youtube.com/watch?v=vApg3qAn55...

Use your B.R.A.I.N. A Decision Support Tool

The Centre for Collaboration, Motivation, and Innovation (CCMI) is a non-profit organization dedicated to building skills and confidence for better health and health care. Their vision is "to improve health outcomes through helping people take active roles in their health."

The BRAIN Informed Decision Making Aid

Achieving this vision entails the development of tools that can facilitate patient-provider conversations. To that end, they have adapted the BRAIN Informed Decision Making tool from the International Childbirth Association.

At the recent BC Patient Safety Quality Council's Quality Forum (#QF16), I was asked to give a talk on Choosing Wisely and was put into the "Patient Empowerment" breakout session. It was fortuitous that my talk preceded that of the CCMI team as I got to see their presentation on the tool and learn about its development (slides accessible here).

Helping a patient to explore the [B]enefits, [R]isks, [A]lternatives, their [I]ntuition, and [N]ext steps, the BRAIN tool can assist people navigating any significant health choice.

You can view and download the PDF on the CCMI's website. The simple format and generalizability means it could easily become a 'go to' tool for patients and clinicians who wish to engage in shared decision-making.

Please feel free to leave your feedback on this tool in the comments section below; the input can be forwarded to the CCMI team. Has it been a helpful tool for you as a patient or caregiver? Do your patients find the format straightforward?
 

More

Seeking more tools like this to facilitate patient-provider discussions around important health choices? Less is More includes a list of mainly Shared Decision Making Tools, in the hands-on resource section.

Source: http://www.centrecmi.ca/wp-content/uploads...

Quality Forum: A New Kind of Rounds (Teaching patient-centred care that avoids unnecessary and harmful interventions)

I have followed the Do No Harm project and their articles in JAMA's Teachable Moments section (under the Less is More theme). Then, at the Lown Institute's Road to Right Care conference, I learned more about "Right Care Rounds," and in Nanaimo we developed our own version.

More background information and the talk from our first session, on the subject of treatment of Type 2 Diabetes in the elderly, can be found here.

Following the success of this event, we decided to do more of them. Our next one is tentatively in April and will be on the subject of overtreatment of hypertension. Thinking, "why not spread the message of what we are trying?," we've created a poster that I will present at the BC Quality Forum.

You can view the full poster 'storyboard' by clicking the image below.
 

Difficult patients. Sigh! (Impact of patient requests on provider-perceived visit difficulty in primary care)

 "No ma'am, your thumb isn't broken. I suspect the pain is as a result of pressing your call bell over 43 times in the last hour."

"No ma'am, your thumb isn't broken. I suspect the pain is as a result of pressing your call bell over 43 times in the last hour."

Sometimes physicians talk about the "difficult" patient with exasperation in their voice.  Nurses know these cases even better.

Most patients and families can tell your about a doctor or nurse who was terse, arrogant, disinterested, or even callous.

These encounters can be "soul-sucking," "difficult," and "draining." The individuals are labeled as "entitled," "unrealistic," "demanding," or ... worse.

That's not ideal terminology although the truth is that some patient encounters are harder than others, and we can't always figure out why. If we have a frustrating appointment, we equate the difficulty with the person, not the situation. As physicians, we often blame the patient!

"It's a personality disorder." "She's a rich, demanding snob." "He refuses to accept this."

On the surface are our attitudes, biases, and skill sets. Just like "difficult" doctors, "difficult" patients are, in our eyes, not open-minded, have not mastered skills of effective communication or listening, don't want to be told they are wrong, demand ridiculous things, or dig their heels in despite evidence that contradicts them.

Sometimes stubbornness is advocacy and it is necessary. Sometimes asking lots of questions is essential to developing an understanding from which a partnership can follow.

There is usually more to the story than just a clash of the personality of the clinician and the patient, and the health care provider should be sensitive to this; empathy means acknowledging that other people have "stuff" going on in their life. Fear, anger, embarrassment, uncertainty, and anxiety are among the many emotions that can make a clinical exchange sour.

With time and worldliness, and maybe some training, we grow and learn to help sort through that. Interestingly, the kind of encounters that health care providers find difficult are generally around people asking for tests.

According to Fenton et. al's paper, Impact of Patient Requests on Provider-Perceived Visit Difficulty in Primary Care, in the Journal of General Internal Medicine:

[Primary Care Provider] (PCP)-perceived visit difficulty is associated with patient requests for diagnostic tests, but not requests for pain medications or specialist referrals. In this era of “choosing wisely,” PCPs may be challenged to respond to diagnostic test requests in an evidence-based manner, while maintaining the provider–patient relationship and PCP career satisfaction.

They looked at 824 clinical encounters. Even adjusting for medical and psychiatric conditions, it was asking for tests that made clinicians rate the encounter as more difficult.

Fortunately, there are tools to help with this. A (not well curated) collection of Shared Decision Making tools is available on this site. Another time, I'll write about the evidence of efficacy (or lack thereof?) behind these aids.

The Choosing Wisely campaign is a prominent effort to facilitate these conversations about unnecesary tests. The Canadian and American sites both have many educational resources to help us with discussing diagnostics and therapeutics, and the AAFP has a great article on difficult patient encounters

It's not rocket science. We must remember that patients are human beings. Hopefully they will extend us, as providers, the same consideration.

 At least he used the sensitive kind of tooth paste?

At least he used the sensitive kind of tooth paste?

Finally: yes, some people, whether doctors, patients, nurses, or family members, are just plain jerks.

Source: http://www.ncbi.nlm.nih.gov/pubmed/2537383...

When the nurse told me "less is more"

I was called to the emergency room to admit a very ill patient. With sepsis and an MI, this frail elder probably wasn't going to do so well.

“He’s pretty sick, eh?”
“Yah. Poor guy.”

The nurse and I paused, resigned to the fact that this elderly man was nearing his end and there was little we could do to change that. I think we both sighed at the same time.

I entered the room and talked to the patient and the family at length. They showed me a photocopy of the DNR form he had signed years ago. He didn't have any kind of advance directive, and had rarely talked about the process of dying, aspects of medical treatment, or what his goals might be for the remainder of his life.

At home, he spent most of is time in bed. Mobility was a bit shaky with a walker so it was safer to stay put. Poor hearing, shoddy vision, and mild dementia made it nearly impossible for him to read or watch TV or to do much of anything, really. He still beamed during visits from the grandkids. His daughter told me that she thinks he had been depressed for a long time; every second day he would say that he was ready to die.

I stepped closer to him. The laboured breathing didn’t look any better close up. He did have the breath to tell me, “I’m dying.” When I discussed the various range of treatments from comfort care (treating pain and respiratory distress), to medical management (antibiotics, blood thinners), to aggressive medical therapy (maybe some non-invasive support for breathing), he said that he wanted to die.

Was he just feeling terrible because his heart had jammed from the strain of fighting off a systemic infection, something that would be exhausting and uncomfortable even on its own? Or was this an expression of considered hope for an end to his now languid existence?

It wasn’t easy to communicate clearly or in detail. I asked more questions, but he said little. Even with a raised voice, I don’t know if he could hear me. His family was uncertain about what he would want done. It was clear that anything aggressive was not right. With failed kidneys, I’d have to give an IV blood thinner (heparin infusion) with up to 4x a day lab tests to prevent worsening of the heart attack. His breathing might get worse and if so, could be helped by strapping a machine on his face to push and pull air in and out of his lungs. That seemed cruel.

But, should I still offer some minimally invasive things that might improve both quality and quantity of life? Antibiotics might help the breathing to get easier and give him a chance of surviving. But this might also just delay the inevitable, prolonging suffering.

I try not to be wishy-washy and give patients and families clear recommendations, but it is hard. When people’s values vary so widely, and there are several avenues that might be appropriate, I don’t feel I can make the decisions for them.

I try really hard not to push my belief in “less is more medicine” too far. I don't want patients to be denied opportunity for healing and improvement. Just as I feel very strongly about doing less of the unnecessary things and interventions that will give more harm than benefit, I also feel very strongly that patients should have timely and meaningful opportunity to have the tests and treatments that might really benefit them.

“What do you think he would want? Is that consistent with his wishes? . . . ”

After I finished talking to the patient's family, I confirmed the plan with the nurse. We would keep the antibiotics and a few heart medications, but for the most part emphasize comfort. I left orders for adequate medications for pain, respiratory distress, and restlessness, to be used regularly if needed. If he got worse, we would stop the antibiotics. I didn’t think they would really help him but his family wanted to try. Although they would not want to extend his distress, it was all pretty sudden and not treating potentially reversible things was different than ensuring he was comfortable while dying (when no reversible causes remained).

It felt like we had arrived at some understanding of the medical reality, the patient’s wishes, and the substitute decision makers’ needs. As I discussed this and explained to the nurse that it wasn't maximum medical therapy but that it seemed a reasonable approach. Nurses, especially those who've got experience under their belt, seem to have a kind of wisdom that comes from the direct care of patients like these.

She looked at me and said "well, you know, less is more."

My colleague, an ER-physician who was in the same residency program as me and knows my passion, was within earshot. She chuckled.

A big smile stretched across my face, and I started looking at my list to find the next patient.

Patient-Friendly Portal for Choosing Wisely Canada

Choosing Wisely Canada (CWC) has been on a roll lately with some exciting initiatives, including reaching out and empowering medical students to be leaders for change.

They've also just launched the patient-focussed part of the website, started ramping up the 10 million challenge, and upped the PR push to advocate for culture change with the slogan "More is not always better."

I love that the campaign is growing beyond creating lists about unnecessary and harmful tests and treatments, and blossoming into a strong organization that is beginning to tackle some of the drivers of overtesting and overtreating at the root of the problem.

I always worried that CWC wouldn't do enough "big picture" stuff, but I am so very glad to be proven wrong!

 

Check out the new patient portal or join the 10 million challenge, a Canada-wide collective action initiative to help prevent 10 million unnecessary tests and treatments by the year 2020. And, keep a close eye on Choosing Wisely Canada because I have a feeling there's a lot more to come!

Source: http://choosingwisely.ca/

Must Watch VIDEO: Intro to Too Much Medicine (ABC Catalyst)

28 minutes. That's all it will take to experience a fantastic overview of "too much medicine." 

Australian Broadcasting Commission (ABC)'s Catalyst has been able to clearly describe the problem, share common examples, offer opposing perspectives, and focus on some avenues for change. With guests like Dr Iona Heath (a retired GP and former President of Royal College of General Practitioners at the forefront of the movement to prevent overdiagnosis) and Dr Ranjana Srivastava (an oncologist, who wrote about the right amount of medicine in the context of her mother), it's persuasive, and it is for everyone:

  • newbies: patients and health care providers who are new to the concepts of "overdiagnosis," "overtreatment," and the idea that in medicine, sometimes more is not better will find this a decent introduction
  • keeners: this is an EXCELLENT video to use in your teaching and in spreading the message
  • skeptics: while this video may not persuade you to say "no" to having mammograms or stop ordering them for your patients, for example, it might help reframe the problem: 
    • the main idea is not "never do this test or treatment" but rather: we must combine the best available evidence about risks and benefits of having vs. or not having a test or treatment with the patient's goals, and currently we are doing a pretty bad job of fully informing our patients to empower them to make the choice that is appropriate for them


Go ahead!

 

Could our relentless pursuit of good health be making us sick? Advances in medicine have propelled health care to new heights and a vast array of diagnostic tests and drug therapies is now available. But are we getting too much of a good thing? An increasing number of doctors now say that sometimes, "less is more" when it comes to medical interventions. Some doctors are concerned that resources are being wasted on the "worried well" and that the ever-expanding definition of how we define "disease" has been influenced by vested interests. Could excessive medical interventions be causing more harm than good? Dr Maryanne Demasi examines how our relentless pursuit for good health might be making us sick

*NB if the youtube link doesn't let you view the video from your country, try ABC's website: http://www.abc.net.au/catalyst/stories/4339690.htm*

Want more? Australian media is just knocking it out of the park! ABC's Four Corners did a similar video, Wasted that is also worth a look.

Source: http://www.abc.net.au/catalyst/stories/433...