Shortly after my husband’s assisted death, I wrote a blog for Dying With Dignity Canada. Within the next six months I had written two more blogs and participated in two podcasts talking about MAID and grief. A year after that first blog, I found myself in front of a CBC Newsworld camera on the day of Audrey Parker’s assisted death (https://drive.google.com/file/d/1l4oetidMUQnxyBIAxtwjg_vHsKgeD6nY/view?usp=sharing), followed shortly afterward by a Pecha Kucha audience in my home city (https://www.pechakucha.com/users/jana-buhlmann).
Why am I sharing the above accomplishments? Recently a friend and mentor wrote a piece about her relationship with patient engagement (https://suerobins.com/2019/01/23/to-what-end/). As Sue says, “I tell you this not to prove my credibility. . . . ” She goes on to challenge advocates to ask themselves, “Why am I doing this?” Sue’s question is a good reminder of my own philosophy on any voluntary effort: Always consider what I want, alongside what I give.
So why has the last year and a half of my life been a marathon of story telling? Well . . . I need to understand. I need to understand why my husband died angry, the nature of my own grief, the barriers to MAID that we were so fortunate to avoid, and how I feel about my own relationship with healthcare. And beyond simply understanding, I want to be clear on what I want out of BOTH my life and my death.
And so I have been writing and (nervously) speaking and learning and advocating and listening. I won’t share with you the average number of hours I spend on my iPhone, as it so parentally informs me once a week. My Twitter feed is filled with posts about grief and end of life, but increasingly it is dominated by the voices of patient and caregiver advocates and a variety of healthcare professionals (HCPs). This is the breadth of learning I crave, as I listen to the experiences of parents in the healthcare system, and of doctors, many of whom are raising their personal voices as equally as their professional opinions.
At first I surprised myself, when jumping into a Twitter dialogue with experienced professionals and seasoned advocates. I checked in on this newfound voice, and was reminded that I am a part of a small but growing community – those that loved someone who chose an assisted death, and are willing to represent that experience. These are my new credentials, and arguably they lend themselves to a new form of advocacy.
Who are we? Loved ones? Caregivers? The families and friends of those who choose MAID? It is hard to pick a name that really pinpoints the view from which we speak.
When I first began to share my experiences, it was grief that took the pen. Slowly – over time – I felt compelled to speak for my husband and his choices, as he can no longer. But now it is as if both of those contexts have merged and I share the view of a patient, informed by having loved and given care to a man who unwaveringly held on to his right to end his own suffering. So I am not looking to simply engage, nor just to be (patient) centred. I am looking to choose, which as above, is about both my life and my death. This means that I want to feel empowered, and I am sure that as you read these words, you can easily come up with an example of an experience in which you felt powerless within our current healthcare system.
Another patient advocate to whom I look for inspiration offered the 2019 new year intention of being an activated patient: “Being activated means having the knowledge, skills and confidence to manage your health and health care.” (https://medium.com/@clairesnyman/your-new-year-intention-how-to-be-an-activated-patient-in-your-health-care-4b82b3eb37b6) I have been sitting with this adjective – activated – and am beginning to think that I will leave empowerment where I dropped engagement and centring.
But there is an equal and necessary change that must accompany the activated patient, and that is the “humanized” healthcare professional. Many such professionals have been taking to social media of late, to speak candidly about the impact of the current healthcare system upon their mental health. Workloads and expectations are just two of the concerns that medical doctors and others are citing, as having a negative impact. They are writing about their experiences as patients, as well as the emotional toll of long days and their own imperfection in a system that expects otherwise.
There are a lot of healthcare practitioners that I could reference, in their most vulnerable sharing of personal feelings and experiences alongside the professional. But my sense of the activated patient roots in my husband’s choice of MAID, and so it is the MAID provider that I will highlight in arguing for the connection that I crave with a healthcare practitioner. Conversations with other loved ones have shown me that not all MAID providers open themselves personally to patients, but I believe this is the quality that makes such practitioners unique.
The founder of the Canadian Association of MAID Assessors and Providers (CAMAP), Stefanie Green, has spoken about the type of grassroots, collegial learning that has arisen in this new, Canadian medial practice. “I’m a family doc by training, and a lot of people in this field are family docs, and when we sit in a room with a patient, they put their trust in us for many, many things . . . . So it’s not a foreign concept that we’re talking on a very intimate, emotional level with the patient. We evaluate capacity all the time in our work, and we talk end-of-life issues. We do have the skills, so it’s not totally crazy, but it is new.” (https://www.macleans.ca/news/canada/qa-stefanie-green-on-helping-doctors-navigate-assisted-dying/)
So I am leaving my thesis until the end of this piece, and I am hoping that you are with me as I put forward the argument that MAID is at the forefront of a revolution in healthcare. In an end of life choice made by an activated patient and supported by a healthcare practitioner who is not afraid to share their humanity alongside their skill, there is the potential to trigger all of our healthcare relationships such that they create a bond between a patient and a practitioner.
It is fitting that I have been deeply inspired by the voice of an ex oncology service line administrator named Andy DeLaO – CancerGeek on social media – as it was cancer that ultimately ended the life of my husband. Andy eloquently and actively argues for a return to the art of medicine. “Patients want care delivered specifically to them, for them, in consultation with them, to see their expectations, and on a personal basis by an entity that they trust.”(https://www.kevinmd.com/blog/2017/08/health-care-n-1.html) I know that is what I want, for my living and my dying. What about you . . .