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
“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 worse. We 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.
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