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...

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/

Physicians are also squeamish about Advance Care Planning discussions!

The Vancouver Sun featured an article, "Refusal to face reality of death leads to increased use of aggressive, futile health-care efforts: Doctor calls on Canadians to 'normalize conversations' about end-of-life care"

It's great to see this kind of story popping up across the news. The more we talk about it, the less scary it is to discuss; the end result is that we'll provide less futile care and offer better palliation, sooner, meaning that patients can have the best possible quality of life until the end.

The title of the video basically says it all; cardiologist Dr Heather Ross talks about the challenges that physicians face when they need to talk with patients about end of life care. It's interesting that she should remark on her discomfort with these kinds of discussions, as that was not something that came up in the study that prompted this Sun feature. 

The study in JAMA Internal Medicine is Barriers to Goals of Care Discussions With Seriously Ill Hospitalized Patients and Their Families: A Multicenter Survey of Clinicians. You at al. surveyed 1256 Canadian health care providers to identify some of the major challenges with discussing end of life situations and they identified the following:

  • family members' or patients' difficulty accepting a poor prognosis

  • family members' or patients' difficulty understanding the limitations and complications of life-sustaining treatments

  • disagreement among family members about goals of care

  • patients' incapacity to make goals of care decisions

Clinicians did not view system factors as significant barriers to these discussions, which I find surprising since we usually talk about underfunding, overcrowding, paperwork, communication errors, and bureaucracy whenever we have a tough problem to solve.

Interestingly, health care providers did not feel that their own skills presented major barriers to having care planning discussions. Well! I find that hard to believe. Clinician factors probably contribute greatly and we seem to have a blind spot for our own weaknesses!  

Fortunately Dr You acknowledges this:

“Overall, the sense from the clinicians is that patients and families tend to get in the way” of making concrete decisions about a patient’s care plans, You said. “This is what they perceive,” You said. 
“But I think it reflects that if patients and families are having a difficult time, then one of the solutions clearly has to be that physicians need to be skilled communicators — they need to know how to navigate these sometimes emotional or difficult discussions and be sensitive,” he said

A clinician's personal discomfort, uncertainty about prognosis, fear of not being liked, and other individual factors are definitely contributors to the difficulty of talking about dying with patients. A lot of the things that make it hard for doctors and nurses to talk with patients about planning for death and dying also contribute to the more general problem of inappropriateness in health care. 

So what can we do? Start here: It's Time to Talk: Advance Care Planning in BC. 

I'm proud to be a part of the Doctors of BC Council for Health Economics and Policy (CHEP), which is where Dr. David Attwell  spearheaded the creation of this policy paper.

Take a look. It's never too late to start talking about it!

Advance Care Planning Does Not Adversely Affect Hope or Anxiety

I sometimes have a hard time bringing up advance care planning, goals of care, and wishes around resuscitation with patients and their families. Is it because I'm afraid?

Nope! I've done it so much and make it part of the admission routine. And, I enjoy it because I think it is an amazing thing we can do to discuss and honour someone's wishes. Sometimes expectations are unrealistic but that is usually caused by lack of knowledge about what resuscitation can do and what it cannot; it is a pleasure to educate and also to provide my medical advice, as I would around any other issue.

Usually, it's challenging because the patients I see are often geriatric and this often comes with some barriers to communicating. Some of them are in a state of acute delirium. Some have advanced dementia or cannot speak due to aphasia from a stroke. A few have extreme deafness and blindness to the point where no aid can help us 'talk' clearly together. Many, in the big city hospitals, do not speak English or French (our National languages). Interpreters are sometimes available for other languages, but not often in a timely way, and few of them speak unique dialects that some patients have.

With those barriers, often we rely on their family members, usually spouses or children, to help translate or to help us understand what the patient's goals and wishes for end of life care might be. Sometimes it is very clear and has been laid out in an Advance Directive or in a conversation with family. But often, it's something that "never came up."

Families often find it distressing. Many say "in our culture, we don't talk about that." Or "oh, we don't want to SCARE mom or dad." I usually gently insist, reframe the discussion, and ensure they realize the importance and routine nature of it.

Discussing dying doesn't mean someone is dying, or that we are giving up on them, or that we will not treat them to the full extent that is appropriate.

Some doctors, who might be labeled as "too squeamish" to discuss goals of care, simply don't do it, which I think is unacceptable. Bur rather than call them names, we need to find out why they aren't having end of life discussions and empower them to feel comfortable and competent at doing so. Maybe they think it takes too long, maybe they worry they can't help the patient make an appropriate decision, or maybe they just need to have some mentoring to learn how. Most of the time they say "the family thought it would be too distressing."

Fortunately, this issue has been explored and we should fear not: Trying to avoid causing psychological distress isn't a legitimate reason to skip talking about end-of-life care!


Studies, like this latest one in The Journal of Pain and Symptom Management, show that Advance Care Planning doesn't make people hopeless or anxious. [you'll need an institution subscription to access the full accepted manuscript, though the abstract is pretty clear]:

Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients’ psychological well-being.

To provide patient-centred care, we need to talk to patient (or their substitute decision maker), not around them. If you are a health care provider, don't be afraid; ask them head on about their goals of care and make recommendations about what is or isn't medically appropriate. You can do it!

Source: http://www.jpsmjournal.com/article/S0885-3...

Prescribing the end-of-life conversation: Dr A. Volandes

It is a treat to see more and more articles in major publications outlining the need to talk about death and dying. The more we talk about it, the easier it gets.

If doctors (and patients) could see 'not knowing the patient's goals of care' as a problem as in need of urgent solving as 'the right-lower quadrant is tender,' 'the rhythm is v. tach,' or 'the potassium is 1.8' then we would all certainly be better off.

Read Dr Volandes take, subtitled: "Is saving the life of a terminal patient always the best medicine", in the Boston Globe.

Source: http://www.bostonglobe.com/opinion/2015/01...

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?