What Matters to You? Day - June 6, 2017

"What Matters to You?" Day is June 6, 2017! Ask What Matters. Listen to What Matters. Do What Matters.

 

Medicine is undergoing a huge transformation, shifting away from the historic model of paternalistic, top-down, doctor-driven health care. We started towards patient-driven, consumer medicine, and thankfully are starting to settle at a beautiful middle-ground, which is patient-centred care, using interdisciplinary clinician expertise, and a process of shared decision making around a patient's needs and priorities.

That is a lot of words, when really what it boils down to is this: shifting the emphasis towards caring for people rather than 'doing medicine.'

Or in even simpler terms, we should be asking "What matters to you?" and shaping the care we give to help people find the best fit for their goals. 

This is a new initiative in British Columbia, organized by the BC Patient Safety Quality Council (BCPSQC), to promote meaningful conversations around health care between patients and providers. "What Matters to You?" Day is based on a now global campaign that started in Norway in 2014.

We already incorporate this into our work in the Palliative Care and 'ED2HOME' services at my hospital, but I am keen to help spread the word for this very important idea so that all patients have a chance to answer the question.

From the BCPSQC:

Why does it matter?
Because we believe great care begins with a question. Providing patient-centred care is important because it results in better outcomes for patients and greater satisfaction with care. “What Matters to You?” Day supports this by putting the patient voice at the centre of care, by focusing on what matters to them.

When a health care provider starts a conversation by asking what really matters to the person they are caring for, it helps them to build trust, develop empathy, and understand their patients. Ultimately, it improves the quality of care they provide.

There are lots of ways you can support "What Matters to You?" Day

  • Join us & declare your intention to have a conversation about what matters, whether you're a care provider, patient, family member, or health care provider
  • Download our Getting Started Kit & learn more about the campaign
  • Order free resources to promote "What Matters to You?" Day. We've got posters, pocket cards, stickers, and more resources designed for patients and providers. We'll mail them anywhere in BC! 
  • Spread the word online using our simple, prepared messages and digital resources!
  • Get ready for conversations about what matters with our skill-building tools
  • Watch and share the campaign video, above

Celebrate The Virtual Launch!
We'll be sharing messages about "What Matters to You?" Day across digital channels, so join the conversation on Twitter, Instagram, or Facebook by using the hashtag #WMTY17! You can even add a #WMTY17 Twibbon to your profile photo to spread the word with every message you share!

Learn more: What Matters to You Day

Source: https://bcpsqc.ca/what-matters-to-you-day/

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...

DON'Ts for Long Term Care Patients: #ChoosingWisely Canada

I have been a serious fan and also a concerned critic of Choosing Wisely Canada (CWC) over the years. Overall the campaign is excellent, encouraging conversations between patients and providers to help prevent harmful and unnecessary tests, treatments, and procedures.

While I love the new emphasis on the high-level message "More is not always better," my feelings have always been lukewarm on the lists of Choosing Wisely Canada (CWC) recommendations, created by (mostly) physician associations not by Choosing Wisely Canada, as they vary in strength, currency, and courage. For example, the CAEP (Emergency physicians) list is quite clear, direct, and practice changing. The Orthopedics list is irrelevant, and not wisely chosen at all, lacking the moral fortitude to tackle common, high-paying procedures that have limited/no evidence to support them.

The most recent lists reinvigorate my interest! It is exciting to see a list from the Canadian Nurses Association (CNA), as nurses have an incredible role in advocating for patients and in helping patients make decisions. Hospital-based nurses usually know their patients well and might even have a better sense of their goals and needs than would a physician; a nurse's advice can easily sway a patient to see "too much" medicine, but it can equally reassure that patient that a test or other intervention may not be right for them.

Image from unknown source on twitter; quote from an interview with the  Centre for Advancing Health

Image from unknown source on twitter; quote from an interview with the Centre for Advancing Health

Because most mornings I work in a program that is designed to help frail elders avoid unnecessary/ unwanted admissions to hospital, the Choosing Wisely list for Long Term Care (LTC) is extremely relevant to my practice. #1 (see below) resonates particularly with me, so I'm glad to see it is the first on the list. I see countless patients who could (and should) be looked after in their full-care facility but unfortunately they have turned up at the hospital. There are a number of reasons this happens, including the inability of the facility to contact the GP or the GP's inability to attend the patient in an urgent fashion, the family's 'insistence' that the patient be "checked out" at the hospital, a lack of clarity on the patient's goals, unclear understanding of the natural history of their disease, insufficient staffing at the care facility, etc. And sometimes these patients really do need to be at the hospital.

We clearly have a lot to learn both in how we communicate and in how we approach care for patients in long term care. This list is a great addition to the tool kit that might help us give LTC patients the right care for them:

  1. Don’t send the frail resident of a nursing home to the hospital, unless their urgent comfort and medical needs cannot be met in their care home.

  2. Don’t use antipsychotics as first choice to treat behavioural and psychological symptoms of dementia. 

  3. Don’t do a urine dip or urine culture unless there are clear signs and symptoms of a urinary tract infection (UTI).

  4. Don’t insert a feeding tube in individuals with advanced dementia. Instead, assist the resident to eat. 

  5. Don’t continue or add long-term medications unless there is an appropriate indication and a reasonable expectation of benefit in the individual patient. 

  6. Don’t order screening or routine chronic disease testing just because a blood draw is being done.
     

See the list here or download the PDF.

Source: http://choosingwiselycanada.org/recommenda...

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.

MUST WATCH: Ain't the Way to Die (@ZDoggMD)

Watch this. Share this.

ZDoggMD (Dr Zubin Damania), once a hospitalist, now a primary care revolutionary with his Turntable Health project, has always made hilarious videos about life as a physician, the patients we see, and the culture of medicine.

Below is his most poignant piece, revealing the difficulties of end-of-life conversations and medical futility both from the patient and the physician perspective. It's not corny or cheesy. It is bang-on.

"Ain't the Way to Die" (a parody of Love the Way You Lie, by Eminem and Rihanna) is so scarily accurate. The same problems he sings about are what I wrote about in "I QUIT! Will the law force us to provide futile, harmful care?"

I have not quit medicine, probably because there are people out there like Dr Damania who understand exactly what it's like to be asked to prolong someone's suffering.

I've never been able to relate to the angst expressed in a rap before, I guess because I don't have a lot of angst. But this video takes the words right out of my mouth, highlights all the heavy-sigh moments of these conversations - it's time to call the family, the relative in another country who says "he'll wake up," or the conflict in the family between ones who know he would not want to be a vegetable and the others who are holding on out of guilt or fear.


The vent-bucking sounds and monitor bleeps incorporated into the end of the song squeeze the adrenals.

Do watch. 

4 minutes could not be better spent.

Lyrics: “Ain’t The Way To Die”

Based on “Love The Way You Lie” by Eminem and Rihanna

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s not right because this ain’t the way to die, ain’t the way to die

Patient:
I can’t tell you what I really want
You can only guess what it feels like
And right now it’s a steel knife in my windpipe
I can’t breathe but ya still fight ‘cause ya can fight
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate
I’m like a pincushion, I hate it, the more I suffer
I suffocate
And right before I’m about to die, you resuscitate me
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…
Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die

Doctor:
You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em
Be at peace cause you miss ‘em already and they ain’t gone
Beep beep, the ventilator alarms
I swore I’d never harm ‘em, never do nothing to hurt ‘em
Hippocratic oath primum non nocere now I’m forced just to torture ‘em
They push full code, no one knows what his wishes were
His sister heard him say once, “I don’t wanna be a vegetable”
But no one agrees in the family, his caregiver Kate
Wants him comfort care but Aunt Claire lives so far away
That her guilt eats her like cancer
So she answers, “Wait! I think he’ll wake”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain
Critical care? Just hypocritical when it’s so insane
But they insist I shock his heart again so I persist
Guess that’s why they say that love is pain.
Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
The way that I should die


Source: http://zdoggmd.com/aint-the-way-to-die/

Demanding Patients? Not so in Oncology

Surveyed physicians tend to place responsibility for high medical costs more on “demanding patients” than themselves. However, there are few data about the frequency of demanding patients, clinical appropriateness of their demands, and clinicians’ compliance with them.

Exactly. This JAMA Oncology paper looked at 5050 patient-provider encounters in the oncology context and found that patients requested things in 8.7% of the encounters, and these demands were only considered inappropriate in 1% of encounters.

Number and Types of Patient Requests or Demands (JAMA Onc)

Number and Types of Patient Requests or Demands (JAMA Onc)

I think we need to be very careful about blaming patients. I do it... but I'm getting better at seeing the bigger picture. Yes, sometimes they are in the stage of denial and struggling to cope with their diagnosis. They may ask for completely inappropriate tests or treatments. Sometimes their expectations are absolutely ridiculous but most of the time this is not the case. The patient is not crazy or 'demanding.' A lot of the time it is we clinicians who put some of the more unrealistic expectations on people's radar.

Educating patients wouldn't change this, except if we can encourage them à la Choosing Wisely to initiate discussions with their physicians about unnecessary tests and treatments.  Educating the clinician, particularly encouraging transparency and openness in communication is really important. However, the biggest thing we can do is to change the overall culture of the health 'system' and our society to make it "okay" to talk about these issues frankly.

I work quite frequently with oncology patients, often in a supportive or palliative role. I find it shocking that many of them have never discussed dying, have not made advanced care plans, and do not understand the goals of their treatment. Often a patient is receiving palliative therapy and yet they believe it is a curative therapy. They may demand aggressive medical treatment, not realizing that they are very close to dying.

Sometimes, when I liaise with the oncologist, he or she explains that they had frank discussions about these things, and I can see it in the notes. It's just been hard to accept and people don't really hear what has been said. Other times, "it just never came up." I find that that hard to believe. It should come up. Shouldn't it?

Not talking about the end of life is doing a patient a disserviceHow can they make decisions about their care without knowing what is going on? It also suggests - as made clear by this study -  that inappropriate interventions might be coming from the clinician, not necessarily initiated at the behest of the patient.

What do you think?

Source: http://oncology.jamanetwork.com/article.as...

My moral distress: a follow-up regarding forced futile care

Well, I guess I'm not alone.

The article 'Doctors and nurses working with critically ill patients suffer moral distress, research finds' in the Vancouver Sun, unsurprisingly revealed that many health care providers struggle with the kind of care we have to give at the end of life.

Researchers from the University of British Columbia who surveyed 1,400 ICU nurses, doctors and other health professionals have found worrying levels of distress in the very places growing numbers of  Canadians will exit this life. Half the critical care nurses surveyed, and 27 per cent of ICU doctors, said they have considered quitting their jobs because of distress with the way patient care was handled at their hospital . . .

[T]hat waiting time for nursing staff is difficult, because the question in their heads is, is the patient comfortable? Are we actually doing harm versus doing good? Are we prolonging the dying process, rather than prolonging life? . . .

'we’re over-intensifying care at the end of life and causing not only the patient to suffer in those final stages of life, but the poor loved one who witnesses all of this and lives with that poignant memory of an intensified death'

I certainly struggle with this, and it has been the dominant existential angst in my world this past year. 

I wrote about feeling like I would quit my job if I was forced to provide medically futile care. I talked to colleagues, friends, and new acquaintances. I met a woman at a conference in Oxford who said it's something (at the end of her career) that she still struggles with and felt things were getting worse. The one bit of fantastic help I found was a colleague who referred me to the British Medical Association policy "Decisions Relating to Cardiopulmonary Resuscitation"  (Oct 2014), which is perfectly in line with my understanding/beliefs/duty. However, it is not Canadian and so can I really adopt it as my practice? I didn't really feel better. I was worried I'd never enjoy my work again.

I love helping people get back on their feet! There's nothing more rewarding than seeing a spry 87 year old lady racing up the stairs with the physiotherapist after a broken hip recovery! I also feel good when I have brought emotional comfort, relief of pain, a warm smile, a hearty laugh, or helped just by being there for a patient who is dying.

When people die, it is very sad. It is also rewarding to have been trusted to support them as they pass away with dignity and comfort, especially when their life no longer contains the qualities that brought them joy and meaning.

I hemmed and hawed and made plans to work in an environment that would still involve end-of-life-care, but would involve less intense encounters. The affluent, big-city hospital is not the right place for me if I find it morally exhausting to navigate the fine line of catering to patient family's wishes vs "doing the right thing and not causing harm."

We don't want to "give up" on anyone, but maybe that's what it sounds like I am suggesting to my patients? Dr Brett Belchetz suggests that by changing the term from "Do Not Resuscitate" to "Allow Natural Death" ('Do away with the term 'Do Not Resuscitate,' National Post) we can help remove some of the distress around end of life planning. That might help, but there's so much more than semantics involved.

I can't rapidly change the thinking of the people around me, but I can change the people around me! As obnoxious a statement that is, it is true and though running away will not solve this problem, it might help me somewhat. I need more joy back in my days! I get some in the big hospital but I remember having much much more every(any)where else.

My partner and I considered relocating back to Ontario, where we are both originally from, for his job and for me to work in a smaller town. We were convinced Ontario wasn't right for us, with the help of one of his colleagues who had recently made the same consideration. Of course it makes sense for us to stay in British Columbia, but I had mixed feelings about not returning to Ontario. Then, a follow-up article by Tom Blackwell appeared in the National Post: Doctors need patient or family consent before stopping end-of-life treatment: new Ontario draft policy.

Since we are talking about death and dying, let me say this draft policy provided the nail in the coffin on any lingering desires to move to Ontario.

I am again terrified of the precedent this sets. 

The blueprint, to be released officially Thursday, contrasts with the existing advice offered by Ontario’s College of Physicians & Surgeons — that doctors should avoid treatments they believe will be of no benefit or harmful to a gravely ill patient . . .

The current policy says when it is clear that a treatment will almost certainly not benefit or may be harmful to a patient, “physicians should refrain from beginning or maintaining such treatment.”

The new draft says physicians must get consent from the patient, or “substitute decision maker” if the patient is unable to voice his or her wishes.

How can I reconcile my profound moral distress with this policy? How will you manage?