Who will be held responsible when my friend dies a slow and needles death?
Is it our health care system or our health care providers that are failing the most complex patients with the greatest needs?
My story is about my best friend, a Sault Ste. Marie woman who has been suffering for the last 35 years from of a myriad and complex set of chronic and acute medical diseases, including mental illness. As teenagers, we used to dream about life one day in the big city after finishing high school. However, she returned to Sault Ste. Marie to complete her professional studies. Bright, educated and committed to her profession, one day the bottom fell out. A series of unresolved surgical and medical problems, as well as family tragedy, left her incapable of continuing her career. She has no family to rely upon apart from an aging parent with whom she resides. Isolated, and for the most part bedridden, she has been denied reasonable and timely access to health care.
For almost two years, she has been without a family doctor. Her psychiatric issues proved to be too difficult for her previous physician to manage, and so in June 2017, she was cut from her doctor’s patient roster. Without a referral to a psychiatrist or another family physician, who could at the very least prescribe her required medications in the interim, I would argue the physician knew my friend’s health would spiral.
Due to her declining health, my friend had granted me Power of Attorney, so I intervened on her behalf and wrote to the Group Health Centre (GHC), where her former physician practices, asking to review my friend’s patient file. In addition, I asked whether another doctor could take over her case. Founded in 1963 by thousands of Sault Ste. Marie steelworkers, the GHC has become a model of community health care in Canada. That’s why I was dismayed by the letter I received in response. It stated that the physician was well within his/her rights to terminate the patient-physician relationship, and due to the severe shortage of family physicians in Sault Ste. Marie, it was unable accommodate the request for an alternate physician as all have full practices.
So with this response in hand, I sought the assistance of the Patient Ombudsman of Ontario. While immediately responsive and empathetic about the situation, the Ombudsman’s Office could not help me as it does not have jurisdiction over private clinics like the Group Health Centre.
When I called the College of Physicians and Surgeons Ontario, I was told that it has no jurisdiction as to the priority sequence of the waiting list for family physicians and could not intercede on behalf of a patient with any of the private clinics within its purview. In essence, there was nothing that the College could do to encourage one of its members to take on a new patient.
Some people may wonder why she needs a family physician given her numerous and complex issues. The answer is simple: the key to all the other doors and medical referrals is a family physician, also known as primary care provider. And one of those doors is HealthLink, a relatively new service, created under the previous Ontario Government, which recognized that patients, such as my friend, required a different level of care.
In 2015, the Group Health Centre was appointed the lead agency for this new entity called HealthLink Sault Ste. Marie. https://www.healthlinkssm.com/about . The following comes directly from the Final Report – Implementing HealthLink Sault St. Marie March 31, 2016.
Five percent of patients account for two-thirds of health care costs. These are most often patients who have multiple, complex conditions. When the hospital, the family doctor, the long-term care home, community organizations and others work as a
team, the patient receives better, more coordinated care, leading to improved or patients and providers, and reducing burden of care costs on the health system……The most complex patients with the greatest needs are often the ones the health care system is failing the most. As the needs of complex patients often extend beyond any one sector or provider, there are greater challenges to ensure care is not fragmented. The immediate need and responsibility are to address population health and the cost of care by building a more integrated system of care where those with the greatest needs who use the most resources have improved access to the services they need, when they need it, where they need it.
So, in theory at least, patients like my friend are to be put front and centre under this new approach. However, patients require a family physician to have access to the services of Health Links that in turn, is supposed to help reduce costly and inefficient trips to an overburdened emergency department that is ill-equipped to deal with complex patients with the greatest needs.
I tried to access the services of HealthLink Sault Ste. Marie on my own. In fact, I tried this avenue before I wrote to GHC and the Algoma District Medical Group (ADMG) which oversees the Centre’s approximately 80 physicians. With the help of some local contacts whose identify I wish to protect, I thought we were close to getting another general practitioner to agree to take my friend on as a patient. In my letter to GHC in August 2018, I had outlined the progress we had made, including the names of those helpful people along the way and their contributions. Imagine my dismay when I was informed that no approval in fact would be forthcoming.
That information is incorrect as [the physician named who would be willing to take my friend on as a patient] has a full practice and never agreed to take this person on. It is unclear to me where the miscommunication … occurred because unfortunately, at this time, there are no family physicians who are adding to patients to their practice.
Algoma District Medical Group, letter dated September 4, 2018.
None of the people who helped me through that process has since returned any of my calls, faxes or email. I have knocked on so many doors from local agencies and hospitals to professional regulators and government institutions that my knuckles ache. The doors have slammed shut. The deafening silence is painful as I see my friend suffer while she waits on an unending list of people in Sault Ste. Marie seeking a family physician. The only advice I received was to take her to the nearest emergency department. Really, that’s the solution?
How does the waiting list work? Does it operate on a first come first serve basis? Is there any ‘triage’ performed to ascertain who may need a doctor the most? Does a healthy twenty-year-old with no current or prior medical conditions have the same standing as a complex patient with urgent needs?
My friend’s conditions have worsened and still the system has failed to provide her with the primary care she so desperately needs. My active intervention on her behalf, albeit from afar as I live in Ottawa, has been a series of slammed shut doors. It is the sound of marginalization. To those who have slammed the doors, and to others whose only advice is to go to the emergency department, she is one of those ‘difficult cases’.
So how can HealthLink, which was developed to address patients like my friend, actually succeed when it requires healthcare professionals, who make the everyday decisions, to empathize and exercise discretion so that system works as it was intended?
And when all is said and done, who will I say was responsible for her death? Will it be my fault for not trying hard enough or because my best wasn’t good enough? Or will she be to blame for her chronic and now deadly diseases, the acute mental illness that enslaved her and for not having a doctor or psychiatrist? Yes, some people will blame her, or even me, but are we not a society that prides itself on its compassion and desire to help those who can no longer help themselves? Where are the people in the system who are willing to put their own interests aside to help those who cannot help themselves? I will bear the tragedy of my friend’s death on my conscience, but will anyone else?
My friend’s condition is complicated. It is a long and personal story that she has asked me not to share until after her death. For now, it has to remain private, but suffice it to say, it requires the assistance of such an entity as HealthLink Sault Ste. Marie. I have chosen to write about her as a last ditch effort to get someone to listen.
My friend has now asked me to help her seek medically assisted suicide to end her agony. Will she again be denied and left to die a lingering and painful death since there are thousands of people waiting ahead of her? I guess her fate remains in their cold clinical hands.