Wake up and smell the #overdiagnosis

Alan Cassels is not a shy kind of guy. He tells it like it is and is not one to stay quiet even if what he says may be unpopular. 

And usually it is pretty unpopular. 

However, it is necessary. From calling out the BC government's inaction on Choosing Wisely to fighting the overmedication of Canadian seniors and digging into the Sex, drugs, and rockin' beat of tramadol and tramacet's marketing machine, he is not afraid to talk about the elephants in the room, when it seems no one else is willing.

 

Cassels is a policy analyst, author, and champion debunker when it comes to pharmaceutical policy and the medicalization of Canadians.

In his most recent article for Focus Magazine, Cassels highlighted the Preventing Overdiagnosis conference, the harms of prostate cancer screening, and my perspective on the issues. 

I've had the chance to work with Cassels on a few small projects but to be called a 'resistor' by him feels like quite a pretty high honour! Check it out in Focus.

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.

CMA General Council (#cmagc): A Success for Canadian Health Care

Advocacy and policy making is just one of the levels I am working at in order to improve health care for Canadians. Sometimes there are direct links to a "Less is More" approach. The Canadian Medical Association (CMA) calls this kind of topic "appropriateness." Although the CMA's annual meeting (General Council) this year only had a few ties to this way of thinking, a few readers have asked me about the event as a whole and so I share my reflections here:

It was an incredible General Council (GC) in Halifax, NS this August. I was able to participate as a Delegate for British Columbia and I cannot explain the feeling of immense purpose and privilege involved in voting on the policy and positions of the national organization of physicians; I was elated to be a part of the formation of some incredibly socially progressive resolutions that will have a real and positive impact on the health of Canadians. We resolved to divest our organization of investments in fossil fuels, to support the principal of a universal/national pharmacare program and a basic guaranteed minimum income, to encourage informed discussions around childhood vaccination in all school age children, and to endorse harm reduction strategies like a national guideline for naloxone availability (for opiate overdoses).

There was some outcry, understandably, from those who live in areas of the country whose economies depend almost entirely on the fossil fuel industry. They were out-voted. We cheered when we made the symbolic gesture – it was not a lot of money for our organization to re-invest in other industries. It was just an incredible statement for our organization to show that the health of the planet affects the health of its people, and we are willing to take the longer view.

The general assembly agreed to disagree on the exact details of how a patient would access physician-assisted death; council continued to extend the privilege of speaking to all attendees which allowed many conscientious objectors (observers, not official delegates) to express their concerns about participation in this, now legal, act. We all trusted in the process of consultation involving government, the public, the CMA (through various other channels besides GC), and other interested bodies (regulatory colleges, insurers, etc.) and will wait to see what this more broad process concludes as far as the exact process for physicians and patients.

It was all quite cordial, actually. The conscientious objectors were respectful and registered their concerns clearly. The voice of youth was loud and clear, with many young physicians and medical students participating as non-voting ambassadors, and a few of us resident and early career physicians voting as delegates. Our push for change was LOUD! The momentum built in the room and many of us felt like serious headway was made for our patients.

As ever, we heard: “you young people are what is ruining our society.” In person the meeting was quite pleasant but those physicians following online, especially on twitter, were outraged.

Mainly, it was those who opposed universal healthcare who were ashamed of what the CMA General Council had done. Everyone voting must be “left wing radicals” and “communists.” All the young people “lack the context” to create and endorse the correct resolutions. 

But, we were there, and we did it. Yes, many of the resolutions we made and voted in may never come to fruition this year. We don’t have unlimited time and finances as an organization and to be effective we must focus on a few narrow issues. However, it is still a big win for Canadians to be able to reference this groundbreaking policy. Setting precedent and having a public record of endorsement of an organization as respected as the CMA may be just enough to help grassroots initiatives get the edge they need to grow into persuasive bringers of change.

Thinking specifically about the “less is more” approach to health care, we also passed many resolutions to help strengthen palliative care programs to make them accessible for more people, and called for regulations around genetic testing/precision medicine and telemedicine [I was a Mover]; we warned that Canada cannot blaze forward with these technologies without consideration of the considerable risks they may pose for patients.

We also recommended that our National Senior’s Strategy and the policy paper "A Prescription for Optimal Prescribing" be updated to include a specific section addressing polypharmacy, which passed on the consent agenda [I was a seconder]. See the video of my colleague, Mover Ralph Jones, speaking briefly to this motion after we knew it had passed, with what I suspect is a nod to Johanna Trimble of IsYourMomOnDrugs? 

The CMA's incoming president for 2016-17 (our choice from BC), Dr Granger Avery, and our colleagues Drs Horvat and Routledge spoke to a disallowed motion that called for efficiency in our health care system. See their video here. Perhaps next year we can refine and submit more motions on appropriateness and efficiency? I have a few drafted already!

In a few narrow ways and in the broader sense, GC was a key step forward in advancing efforts for more appropriate health care. With a strong emphasis on addressing the real determinates of health, the solution of de-emphasizing tests and treatments that are harmful or not necessary also gains strength. Slowly, recognition for the importance of health in all policies is emerging. If a person cannot afford food, it doesn’t really matter if their dose of blood pressure medication is optimized. Right?

It feels fantastic to be a vocal part of an organization of 80 000 Canadian physicians that “get it.”

Dr. Danielle Martin on Transforming Health Care: Three Big Ideas

In 2006, Dr Danielle Martin founded Canadian Doctors for Medicare, an organization which seeks to "provide a voice for Canadian doctors who want to strengthen and improve Canada's universal publicly-funded health care system" and advocates for "innovations in treatment and prevention services that are evidence-based and improve access, quality, equity and sustainability."

Dr. Martin's gave a keynote address at the Family Medicine Forum last week in Quebec and as I was at a CMA Healthcare Transformation Working Group meeting, I was unable to attend.

However, even those who weren't there we aware of the profound importance of her talk. She presented Three Big Ideas for transforming the Canadian Healthcare System. They are sensible, explicitly involve "Less is More Medicine," and are achievable.

She's also speaking on this topic in Vancouver on November 27th.

If you cannot attend one of her talks in person but want to know what her Three Big Ideas are, you still can. Fortunately, she was also the inaugural speaker for the Now or Never: Innovation in Health Care Forum series in Halifax and this was recorded, so you can view a similar talk in its entirety below:

I must admit, Dr Martin already had me won over long ago but her no-nonsense approach to defending, nay, promoting medicare solidified it. Her pointed responses to American politicians this spring had me howling with laughter (and cheering in agreement).

Watch the whole thing or just 2:55-4:00 of the video below if you want to see the bit where her education and passion allow her to shut down the opponents completely. *high five*

I think the Canadian Health Care system is in good hands with her vision.

The Preventative Visit and Choosing Wisely

The preventive health visit is not synonymous with an 'annual physical'

I always felt lost when asked to do a general exam on a healthy person. Every physician performed it differently. Do we check for breast masses? Feel the thyroid? Look at the tongue and mouth for squamous cell carcinomas? Check the belly for a pulsatile mass? Listen for a murmur? Heck it would take hours to go over every mole and mucosa, to palpate every bump and move each joint. So what were we doing?

The American Choosing Wisely campaign, in the list of Society of General Internal Medicine suggestions, recommended in 2013 that physicians stop “performing routine general health checks for asymptomatic adults." (see some backing data)

Many were outraged by this, and a similar decision in Ontario by the provincial government to de-list the annual physical exam, such that physicians would no longer be paid to provide this service to patients who don't require it. The concern was mainly that very important preventative health and screening measures would no longer be undertaken.

Prevention is essential. Not sure about the "quality" of the helmets here, but even the dog is at least trying to being careful.

Prevention is essential. Not sure about the "quality" of the helmets here, but even the dog is at least trying to being careful.

But, a preventative health visit is not the same thing as an annual physical. For example, we've got decent evidence that pap tests are important screening tools for cervical cancer, and have changed our guidelines to use them less frequently. And we are not suggesting dispensing with this. However, recent studies have shown that the pelvic exam (feeling the uterus and ovaries, essentially) really is not essential and many organizations are beginning to recommend against this practice. We had been doing pelvic exams out of "tradition" for the longest time - how much else is driven by tradition?

I come back time and time again to the Milstein paper from Health Affairs, Why Behavioral And Environmental Interventions Are Needed To Improve Health At Lower Cost. We know that prevention is key, but we don't know how, when, or where to deliver it. Dispensing lifestyle advice in the office probably doesn't work (eg. GP advice is ineffective in improving metabolic outcomes in high risk patients). Clearly we need something different to achieve a persuasive, meaningful impact.

A colleague recently sent me an article, from the American Journal of Preventative Medicine (access required - ePub ahead of print, Jul 2014),  which addresses concerns with the way our push for efficiency and appropriateness may be drawing attention away from the real issue of prevention. Wong, Gaster, and Dugdale write:

. . . the Choosing Wisely Campaign sends the wrong message at a time when prevention remains more important than ever, and as the data supporting it grow more complex and more nuanced. The preventive health visit has and will continue to evolve . . . The preventive health visit currently remains an effective tool for increasing adherence to evidence-based service guidelines. This is no time for us to abandon it.

I would personally need to learn a lot more about what "effective" is meant to construe in the above sentences before agreeing wholeheartedly. I don't disagree that we need to spend a lot more effort looking at prevention, but I don't think Choosing Wisely contravenes that effort. 

 

What do you think?