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...

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...

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.

GUEST POST: The haunting death that fuels my passion: a personal reflection

Dr Amy Tan is Family Physician with a special interest in Home and Hospice Palliative Care in Edmonton, Alberta. With a MSc in Palliative Medicine and Research from the University of Cardiff, she is a vocal advocate for end-of-life planning and the care of patients dying outside of the hospital. She also serves as Director of Undergraduate Education Programs for the University of Alberta's Department of Family Medicine. You can follow her @AmyTanMD on twitter.

This is a re-post of a blog originally posted by Dr Amy Tan on Sept 17 on Medium.


The haunting death that fuels my passion: a personal reflection

Dr Amy Tan

“A young mother of 4 children in her 40's, M*, was diagnosed with terminal breast cancer 4 weeks ago. She was referred, at the time of diagnosis, to a (new to her) family doctor who provides home visits for palliative care patients. At the first home visit, the physician speaks to the patient and her husband about the diagnosis, and how they are coping with this awful news. They have chosen not to tell their children (ranging in age from 8–17) that M’s disease is not curable. M and her husband are able to say aloud that she has a terminal prognosis, yet they are hopeful that she will rally and live much longer than the doctors have told her she would. M is extremely short of breath, requiring oxygen to help with her breathing. She has pain in her chest and ribs from the cancer that has spread into the lymph system in the lungs and bones. In the patient’s culture, talking about death is taboo, fearing that this topic will make death come faster. The doctor tries to sensitively broach this topic in order to prepare the patient and her husband for what is likely to come as death approaches with this disease: the shortness of breath, the pain and accompanying nausea and constipation from the medicines that treat the pain, and the fears about dying and about fighting to breathe, among others. The family doctor offers to talk to the children about what is going on and what to expect. She offers a referral to a social worker to help the patient’s children understand what is happening. These are refused despite the great pain M shows -both physically and emotionally- whenever her children are mentioned.

The doctor’s sixth home visit with M is on a Friday afternoon before a weekend. M is deteriorating quite quickly and again the doctor tries to broach the topic of telling the children what is happening so that they can try to prepare for the awful truth. She again is not successful. The doctor informs the Palliative Home Care service that she is available 24/7 for this patient.

The next night, M wakes up gasping for air and with incredible chest pain . There is fear and panic. 911 is called and M is taken to the Emergency Department of a large hospital by ambulance. A chest x-ray shows M’s lungs are full of cancerous fluid. The patient doesn’t want to be intubated or go to the intensive care unit, and so the Emergency team tries to keep her oxygen levels up with a machine that pushes positive pressure into the lungs. There are no beds available upstairs for her to be transferred to because it was a busy weekend of hospital admissions. M dies 15 minutes later, in a curtained off “bed” in the chaotic Emergency Department, with no privacy, no peace, and struggling to breathe right to the end. M’s husband watches this all and cannot understand nor believe what is happening. He doesn’t get to say goodbye to his wife of 20 years. He is completely shocked that his wife has just died in such a chaotic place. Their four children don’t have any idea that this is happening in the Emergency Department, and worse yet, that their mother has been moving through the terminal, dying phase of her life for at least the last four weeks.

The family doctor finds out the following Monday morning that her patient has passed away. “Why wasn’t she called?” was the first question she asks. Upon reviewing the above events in the Emergency Department report, the doctor cries for M, her family and their agony: the agony of both M and her family not being able to prepare for the end, and the agony of M’s loved ones being traumatized for years afterwards because of this death. This was NOT a good death. She had failed her patient.”

I am M’s doctor, and this happened years ago. Yet, M’s death still haunts me and I often wonder and worry about how her husband and children are doing. How did the children take the news that their mother died? Did the older teenaged children feel betrayed and cheated on the opportunity to say goodbye and prepare for their mother’s death?

I know the husband struggled because he dropped off a letter to my receptionist, asking me to fill out life insurance forms. In the letter, he described that his last memories of M were of her struggling to breathe, and asked to discuss all of this with me when he was ready. I left a message that of course he could discuss anything with me, when he felt that he was ready.

I never saw or talked to him again. The family had moved out of the province a few months later to be closer to family.

I wonder about M and her family every time I hear that a patient (who is expected to die from a terminal illness) has been rushed during a crisis into the acute care system and undergoes life-preserving or death-avoiding management at a critical time in the patient’s life — their death. These stories happen too often (still happening today!) and I wonder if there could be a better way.

I choose to believe that there has to be. But how do we get there?

In the years since M’s death, there has been great work done in many countries to help the public understand that Palliative Care focuses on relieving patients’ symptoms and stress of at any stage (including curative) of a life-limiting illness to improve the quality of life for both patients and their families (1). Palliative Care is not restricted to the end of life (2). Great progress has also been made with Advance Care Planning, which involves discussing and documenting patients’ health-care and end-of-life wishes (3,4).

However, there are still many issues that need to be addressed in the health care system to prevent more “bad” deaths like this. Why is the Emergency Room the only option for patients like M in the middle of the night? Well, it actually isn’t, but it appears to be the most common knee-jerk reaction to go to the Emergency Room when patients don’t know what else to do. This occurs even when there is Palliative Home Care in place for a patient, and a 24-hour phone number is given to the patients to ask questions or express a concern. In an ideal world, this phone call would lead to either reassurance over the phone, or a fairly immediate visit by the Palliative Care Nurse to help address the problem in person. The Palliative Care nurses that I work with are all wonderful, but there are usually only a handful of nurses available for an ENTIRE urban Canadian city, and its outlying areas, at any given time. The system is simply not able to have enough home care nurses available to go to every home to assess every call that is received at all hours of the day and night. In times of great stress and panic, however, many patients and their families need to be helped in person, not over the phone. In an ideal world, each of these patients at home with a terminal illness would have a Palliative Home Care nurse and a family physician who knowsthe patient and family, and are available 24/7 to be called upon, given that most Palliative Care is delivered by family medicine in Canada (5). But, this too is an unrealistic and unsustainable expectation.

An ideal world is not possible. But a better world and system could be made possible.

Society expects that babies will be born at all hours of the night. Kitchen table conversations around the world talk about birth stories and often start with “in the middle of the night….”. People everywhere read and discuss some variation of a “prepare for your baby’s birth” book out there and those who have not have been regaled with numerous stories and tips about what to expect and what to do, often unsolicited by friends, family and strangers alike. When a woman has a pregnancy-related concern in the middle of the night, she knows who to call, and where to go for care. In most larger communities, this place is the local Labour and Delivery ward, where healthcare teams are available in hospital overnight to help achieve the universal end goal of a healthy delivery for both baby and mom. My point is that most do plan extensively and prearrange for someone to be available to help them deliver his/her baby according to his/her wishes, otherwise known as “The Birth Plan”.

We as a society put so much discussion, planning and arranging into a person’s entrance into this world. Why does society not do the same for a person’s exit from this world? Both are guaranteed. We as a society so willingly share and hear from the experiences of others regarding birth, but not death. Why not?

Death is absolutely a scary thing to think and talk about. However, I’ve seen too many times that NOT talking about or planning for death can be even worseWe need doctors and healthcare teams to be better trained to talk about this in a culturally-sensitive and appropriate manner with patients (5), and we need society to be more open to discussing this as a way to make more deaths, however inevitable or unavoidable, better for the patient and loved ones.

Even with increased discussions and planning beforehand, there also needs to be more in place to support dying patients away from the hospital. Perhaps if the healthcare system was able to better support after-hours Palliative Care and End-of-Life care for a large capacity of patients outside of the Emergency Rooms, intensive care units and/or acute care hospitals, the public wouldn’t feel as though assisted dying is the only option when faced with a terminal diagnosis. My clinical experience has shown that most patients with a limited prognosis want to live longer, rather than die sooner, but would like to be as comfortable as possible in as home-like a place as possible, be it home, hospice or a long-term care facility. Supporting end-of-life care more effectively will even save health care dollars by keeping patients out of the acute care hospital beds, which would be an added benefit, rather than the primary intended goal.

Why isn’t there a designated urgent access facility for patients who are known to be dying to directly go to, if they are too overwhelmed at home when the time comes? The closest to this that I have seen has been in small rural hospitals where dying patients are moved out of the Emergency Department quickly to one of the few designated rooms in the small hospital reserved for dying patients. Why don’t we have, in larger hospitals, a parallel ward to the Labour and Delivery ward that would have the capacity to assess Palliative Care patients for a sudden unmanageable increase in their pain, or a sudden onset of confusion, nausea or shortness of breath if they can’t manage at home? They could be treated by a team focused on appropriate goal-oriented comfort care, including social workers, pastoral care, nurses, nurse practitioners, doctors, respiratory therapists, and be managed along with the regular family physician’s on-call team in accordance to the patient’s overall wishes. Patients and their families could be stabilized (medically and/or emotionally) over a few hours and return back home after collaborating with their family physician, or if more care is required, then a transfer to hospice or another more suitable in-patient ward could be made. These decisions would all be made with the ultimate goal to provide as peaceful an “expected” death as can be made possible for the patient, and for his/her loved ones.

To be clear: this is not assisted dying, this is effective Palliative Care providing comfort and ease of suffering at the natural end-of-life of a terminal patient.

In Canada, we are more than halfway into the longest federal election campaign ever, and only in the last couple of days, has health care even been mentioned (6). Palliative and End-of-life Care needs to be a priority, not just for politicians, but for all Canadians. As Canada’s population ages, and is expected to have more than 25% of the population aged 65 years and older by 2036 (7), the system will only be increasingly stressed with more patients facing prolonged chronic diseases (8,9), and/or the terminal phase of their lives and illness. There is also the unfortunate reality that terminal illness does not only occur in the elderly population, and support for all patients facing a life-limiting illnesses needs to be maximized, including that of younger adults and children. While I am in full support for a cohesive national senior’s health plan as advocated by the Canadian Medical Association and supported by the Canadian public (10,11), I believe that there also needs to be a related, but different discussion on a national Palliative Care and End-of-Life delivery plan that better serves the needs of not only the dying patients, but of the patient’s loved ones who are left picking up the pieces after the death of the patient. Their health and well-being after death is directly affected by their loved ones’ death and could have even longer term consequences on society and our health-care system with post-traumatic stress, or prolonged grief, depression or anxiety (12,13,14).

I do not have all the answers for all these questions that I ask, but I think we need to be asking more of these questions and trying to find some answers, in order to find a better way. I just hope that others will also ask themselves these questions, and want to help create a better way that will allow for more good deaths. This way, hopefully patient’s death stories like that of M’s above are more the rare exception rather than the all too common occurrence that is unfortunately currently happening.

*Details of the patient, M, (including name, demographics and disease state) were deliberately changed to protect patient anonymity and confidentiality.


References:

1. Center to Advance Palliative Care. What is Palliative Care. New York, NY Centre to Advance Palliative Care, 2012. Available from:https://getpalliativecare.org/whatis/ Accessed 2015 Sept 15

2. Canadian Hospice Palliative Care Association. FAQS: Definition of Palliative Care? Ottawa ON. Canadian Hospice Palliative Care Association, 2015. Available from [http://www.chpca.net/family-caregivers/faqs.aspx] Accessed 2015 Sept 15

3. Alberta Health Services. Advance Care Planning: Conversations Matter. Edmonton AB Alberta Health Services, 2015. Available from: [Conversationsmatter.ca] Accessed 2015 Sept 15

4. Canadian Hospice Palliative Care Association. Speak Up- Advance Care Planning in Canada. Ottawa, ON Canadian Hospice Palliative Care Association, 2015. Available from [www.advancecareplanning.ca] Accessed 2015 Sept 15

5. Shadd JD, Burge F, Stajduhar KI, Cohen SR, Kelley ML, Pesut B. Defining and measuring a palliative approach in primary care. Can Fam Physician2013;59:1149–50. (Eng), 1156–7 (Fr).

6. Bailey I. Mulcair continues health-care push. The Globe and Mail. (2015, September 14). Available from: [http://www.theglobeandmail.com/news/politics/mulcair-promises-500-million-for-clinics-health-workers/article26356275/] Accessed 2015 Sept 15

7. Canadian Hospice Palliative Care Association. Fact sheet: hospice palliative care in Canada. Ottawa, ON: Canadian Hospice Palliative Care Association; 2014. Available from:www.chpca.net/media/330558/Fact_Sheet_HPC_in_Canada%20Spring%202014%20Final.pdf. Accessed 2015 Sept 15.

8. Canadian Hospice Palliative Care Association. Fact Sheet: Hospice Palliative Care in Canada. Ottawa ON Canadian Hospice Palliative Care Association, 2014. Available from [http://publications.gc.ca/collections/collection_2014/statcan/82-624-x/82-624-x2014001-2-eng.pdf] Accessed 2015 Sept 15.

9. Public Health Agency of Canada. Health-Adjusted Life Expectancy in Canada: 2012. Ottawa ON. Her Majesty the Queen in Right of Canada, 2012. Available from: [http://publications.gc.ca/collections/collection_2012/aspc-phac/HP35-32-2012-eng.pdf] Accessed 2015 Sept 15.

10. Picard A. Canadian Medical Association urges health-care strategy for seniors. The Globe and Mail. (2015, August 24). Available from:[http://www.theglobeandmail.com/news/national/canadian-medical-association-urges-health-care-strategy-for-seniors/article26087150/] Accessed 2015 Sept 15

11. Canadian Medical Association. CMA National Report Card 2015. Ottawa ON. Canadian Medical Association. Available from: [https://www.cma.ca/En/Lists/Medias/cma-national-report-card-2015.pdf?hootPostID=73c32759e704b8d68de4624a9491eafa] Accessed 2015 Sept 15.

12. Kirchhoff KT, et al: The vortex: families’ experiences with death in the intensive care unit. Am J Crit Care 2002, 11(3):200–209.

13. Carr D: A “good death” for whom? Quality of spouse’s death and psychological distress among older widowed persons. J Health Soc Behav2003, 44(2):215–232.

14. Wright AA, et al: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008, 300(14):1665–1673.

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...

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!

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...

Atul Gawande: why the health care system should stop trying to help everyone live longer

Quality matters. It's not just quantity that counts towards the end of our lives, and in fact, most people would choose "good time" over "any time." Physicians know this but for many reasons we can't always help patients have the best life possible before death.

Dr. Atul Gawande recently did an interview with the Washington Post on the subject, and it felt authentic. While admire his work, I do not consider myself an unconditional devotee. However, this article is truly amazing.

It is a call to action. He graciously and decisively invalidates all the excuses that physicians create to not tackle end-of-life discussions with patients, confessing some of the challenges along the way.

Read more in The Washington Post.

Some of my favourite excerpts are here:

HP: One tough question. I watched your lecture today with some primary care physicians. Their reaction was to say, “Of course all this information about the need for conversation in end-of-life care was revelatory to you, Dr. Gawande. You’re a surgeon.” In your telling of the story, how much did the culture of specialty care fail to prepare you adequately for the challenges recounted in your book?

AG: Look I’m a surgeon--highly procedural, geared towards always being able to offer something more. It’s no surprise that this field did have prepared us formally for these kinds of conversations. Furthermore, I’m in an academic medical center, high-end Mecca. Many people come there because they want that experimental therapy, the last ditch maneuver against all odds.

. . . If these [end of life] conversations are so important--and people across other fields seem to know it--we’re still not having them. It’s not happening for two-thirds of people with advanced cancers for example. We have evidence that these conversations are even less likely to happen for other common things people die of: congestive heart failure, for example.

Maybe that’s because families and patients tend to move on to a specialist rather than the primary care doctor for these conversations, but I often find primary care doctors aren’t having them, either.
HP: Even if they had the skill to have the conversation, that’s not really who the patients are looking to for these conversations.

AG: If you look at the studies, they find that having a palliative care doctor or geriatrician more closely involved in care can lead people to forego aggressive therapy sooner and have better outcomes--not only less suffering but even improved survival. But we don’t have enough of these doctors to go around. Furthermore, there’s something wrong with the idea that you outsource this kind of decision-making and discussion.
HP: One of your book’s saddest quotes comes from a hospice patient, who says: “The oncologist and the heart doctor told me that there’s nothing more they can do for me.” It’s as if palliative care and hospice are the consolation prizes we give you when we really can’t do anything more.

AG: . . .
Even when we are needing to handoff, I’m involving someone who is going to have palliative care or hospice or primary care team. I’m not involving them because there’s nothing more I can do. I’m involving them because we require other people’s expertise to help us achieve what we’re trying to do.
Source: http://www.washingtonpost.com/blogs/wonkbl...

I QUIT! Will the law force us to provide futile, harmful care?

My partner, Ian, is a pilot. Sometimes he has to get up very early, and one day this week I woke up with him and his alarm at 4:00AM.

While he got ready for work, I flipped through the news on my phone. When I found this story by Tom Blackwell, a health care reporter with the National Post, I lay in bed stunned, unable to fall asleep again.

Toronto hospital illegally imposed ‘do-not-resuscitate’ order against wishes of dying man’s family: medical board (Read)

I was not stunned to read that doctors deemed it inappropriate to offer resuscitation, intubation, and ICU-level care to an 88 year old man who had multiple significant medical problems, including recent bilateral leg amputation. The average patient over 85 has a ~4.5% chance of "good outcome" (leaving the hospital neurologically intact) after resuscitation and I expect this man's chance would have been much lower given the vascular implications of bilateral leg amputation (Good Outcome Following Attempted Resuscitation).

The story mentioned that the doctors unilaterally imposed the DNR order. To read that they switched from DNR to FULL CODE at the family's request is testament to the pressure they must have felt. When they switched it back, it sounds like they did not inform the patient's family of the change, which I think is unfair. However, refusing to provide medically futile care is something that doctors need to be able to do.

I am terrified of the precedent set by the decision of the Health Professions Appeal and Review Board.

Ian, tying his tie, was not surprised at my dismay. I told him I'd have to quit medicine if providing harmful and futile treatments became the law in my jurisdiction.

I can't do it. I just can't.

He looked at me, empathetically. He often tells me that if he took his work home, it would be a bad day for everyone. Plus, commercial aircraft are not allowed in our on-street parking area.

He knows my work is with me all the time. My heart aches far too often these days, as I wonder how long I can last in my job a large, big-city academic hospital where we face demands for unnecessary and sometimes harmful intervention regularly.

These discussions are usually different when undertaken in a rural setting. I've worked in Nunavut, where many people still hunt for the majority of their food, and patients and families seem to understand death. It is not that death is welcome, but there is an understanding that life on Earth will end. When a dying patient tells me their fear of losing dignity and of being in pain, I can reassure them, I can ease their physical pain and support them emotionally for their remaining time. I feel that I am needed as their doctor, and they trust me to help them in any way I can.

Lately, at the big city hospital, colleagues and I have been dealing with families that are adamant we provide what we consider futile and inappropriate care. This is medical care that physicians believe is not helpful and may even be harmful to a patient.

We all want to look after the patients as best we can. We want to be seen as good at our jobs and we want to be liked but above all, we want to do the right thing.

We talk about it at lunch. We wake up in the middle of the night worrying about it. I know this because I asked a colleague if I was the only one, and he told me that he had been up the previous night, worrying about what to do! The oath we swore tells us "Above all, do no harm" and yet we are constantly being asked to prolong suffering. It is distressing. How can we so flagrantly violate our ethical responsibilities?

 

Each person holds has varying definitions of "suffering." So, we talk about these cases, nurses give us their thoughts, and we get multiple physicians including specialists involved to bring new perspective. Sometimes there's an ethicist brought in to help. Most of the time, all the professionals agree.

However, no matter what we say, we cannot sway the family to see that their loved one is in pain. They will not allow us to let them go, and they are incredibly angry at us for suggesting we will not attempt to force-feed them or bring them back to life when their heart stops.

We wonder, is it uneducated families? No, many of those demanding the most aggressive interventions are health care providers themselves. In the story that kept me awake, the daughter is a nurse. In the Rasouli case, where physicians sought to withdraw futile care, the wife of the patient was a family physician in Iran.

Are they expecting miracles?

Is it that they feel entitled to have whatever they want? Do people regard healthcare as a concierge-style service where they can pick and choose whatever options they like?

Ian says:

Thank goodness the passengers don't come into the flight deck and try to tell me how to do my job! If they told me I should land the airplane even though conditions were unsafe, I'd say 'no way!'

I guess it's not that simple in medicine, as health care is a right and a public service. We do have a duty to help people, but sometimes we disagree on what that looks like.

We encourage patients to have some skepticism, to ask questions, and to take part in their health. They put their trust in us to choose the right treatment, to recognize when we need to consult a specialist, and to guide them through the tough times. But when it comes to death and dying, people get squeamish. The trust vanishes.

 

Many families are quite reasonable. They might have a hard time letting go, but gradually, they start to see that mom is really unwell and does not seem comfortable, and they let us do our best to care for her. It's the egregious cases that stick in my mind, the ones where I feel like I've been asked to hurt someone despite my protestations.

I'm not advocating for a return to paternalism. Tell us your goals, your values: what is important to you? Just as you trust a pilot to adapt the flight plan to bring you safely to your destination, trust that your healthcare providers will do their best to shepherd you through your illness.

Discussions usually involved patients with advanced age, multiple co-morbidities, and poor quality of life. Many of these patients do not have Advance Directives, and even if they do, their families do not have to respect their wishes and neither does the law.

The patients are often too unwell to speak for themselves and so it is the family that requests things like resuscitation (as opposed to DNR), artificial feeding (feeding tubes), or what we call "active medical management" which means 'usual treatment' (as opposed to comfort-focused care) in the context of someone who is dying.

Instead of facing what is a natural part of life with grace and dignity, some patients are not allowed this opportunity. They are instead medicalized, which in some cases means brutalized.

A patient who hasn't eaten for weeks is malnourished, yes. That is the progression of her dementia. She has lost the ability to swallow. Her family wants her "helped" by putting a nasogastric (NG) tube into her stomach. She's dying, and this may delay it, but it might also hasten it. Regardless of how long she lives, her last days will be uncomfortable, plagued with complications.

In the face of death, food and hope are highly seductive. But . . . I was left wondering: Does our need to feed our dying loved ones blind us to what’s really best for them? – Dr. Jessica Nutik Zitter, Food and the Dying Patient

Doctors are reluctant to participate in things that seem like torture. We swore an oath that we would not. We try our best to keep the patient's best interests in mind, but after we've fought and fought, sometimes we give in, tired out and afraid of being sued.

Samuel Beckett puts it best:

And when they cannot swallow any more someone rams a tube down their gullet, or up their rectum, and fills them full of vitaminized pap, so as not to be accused of murder.” – Samuel Beckett in “Malone Dies”

 

Two days after the first article, Mr Blackwell looked at the issue from another angle:

Doctors more reluctant to clash with families over end-of-life decisions in wake of Supreme Court ruling (Read)


He's right. We are starting to become crippled by fear. Those of us who aren't yet burnt out try our very best to protect the ethical standards we were trained to uphold. But, we all reach a point where we are tired of being screamed at, tired of seeing nurses driven to tears, and most of all, terrified that we will lose the opportunity to continue in the profession that we value so greatly.

We do what is asked even though we know it is wrong – a disgusting thought. I am young and not yet burned out, but I'm heading there fast because I cannot reconcile the idea of going to work every day and being asked to harm people. This angst makes it so much harder to enjoy all the wonderful moments and to remain humbled by the privilege to care for others.

I see the awe that Ian still has for flying, working as part of a team, taking charge of a metal can full of people who are flying home or somewhere interesting, hurtling through the sky thanks to some combination of physics and magic. Medicine can be that awe-inspiring too.

I don't want to quit. This "job" is so much more than that to me, but slowly the 'job' of being a doctor is ruining my love for medicine.