This post is a tough one for me. The topic of palliation is deeply felt by most healthcare professionals, either via direct care or through personal experience. Although preventative medicine is the over-arching goal, we still tend to see the majority of people during periods of acute illness or marked progression of chronic disease.
My family is no different than many. Our family history is riddled with various cancer scares with at least one related death, significant heart disease, and diabetes. I have been very fortunate to date that the vast majority of my relatives are in good health; they all live in their own homes and can look after their own affairs. However, the time is approaching when end-of-life measures will become a significant topic that none of us are truly ready to accept, myself included.
Most folks are familiar of the concept of a will. The stipulations for funeral arrangements and the dividing of assets is rife with legalese to ensure nothing is left in a grey area. Lesser known is the idea of advanced health care directives, or more commonly, a living will. With Canada’s aging population, widespread education of the public will be needed to facilitate conversations with healthcare teams. Borrowing from an infographic published by the Canadian Hospice Palliative Care Association (CHCPA), one statistic referenced on the Wikipedia link (above) stands out:
Polling indicates that 96% of Canadians think that having a conversation with a loved one about planning for the end of life is important. However, the same polls show that only about 13% have actually done so, or have created an advance care plan for themselves.
Incredible. I encourage readers to have a look at the complete document for some additional eye-popping nuggets: http://hpcintegration.ca/media/56049/TWF%20double%20survey%20infographic%201pg.pdf
The timing of this topic may seem a bit strange so close to the holidays, but I’ve decided to share from my personal experience and also my experience as a pharmacist. The personal side first:
My wife and I were slow to the game. A will was something we had talked about completing but never had the interest, or urgency to follow-through. Now that we have kids, a house, a car, and even a blog (ha!), it was time to make sure we were prepared in the event of catastrophe. We recently sat with a lawyer and were so far out of our depth, it felt like standing on the bottom of the ocean. The questions being asked about asset shares, and custodial rights of the kids were met with knee-jerk responses that we honestly hadn’t thought all the way through. That bit of guidance really made a difference to our peace of mind. I’m writing this on a Thursday, and our first discussion about advanced health care directives literally just happened. Peering over dueling laptops, we agree that if an objective healthcare team determines that the line in the sand has been crossed, we are comfortable with stopping all oral treatments, blood tests, imaging, etc and focusing solely on symptom management. Just verbalizing it now and working through the what ifs (e.g., whether there is dementia or mobility issues) will allow for a degree of clarity during a stressful, highly emotional time.
As a professional, my current role is managing a pharmacy dedicated to nursing home facilities. Nursing homes have palliative care order templates with the various options for pain, dyspnea, secretions, mucosal dryness, delirium, and anxiety. When these are enacted, the expectation is that the philosophy has moved from active treatment to comfort measures. That said, the waters can get muddy when there is disagreement. If the resident is lucid and can still swallow daily medications, will changing daily routines make things easier or more stressful? If diabetes is no longer treated and blood sugars are allowed to soar, will that ultimately add to discomfort? We’ve had occasions where some oral meds were stopped but not others, or specific medications are lifted from the palliative care orders and written separately in order to have select measures in place without continuing down a chosen road. No doubt it’s complicated, and pharmacies only tend to see the medication side of things. Other support functions are invaluable during the decision-making process; chaplains, grief counselors, and social workers can all play a role to ease transitions, particularly if items have been decided ahead of time.
So this appeal goes out to as many as it can reach: the young, old, sick, healthy, families large and small. Please share your end-of-life wishes with your loved ones to avoid any uncertainty as to your wishes for yourself and for them. How do _you_ want to be cared for when you’re no longer able to process options or articulate decisions? Even though they won’t be needed for a lifetime, choices made today will mold the end of one.
http://www.cdha.nshealth.ca/palliative-care
Disclaimer: The views and opinions expressed in this article are those of the author(s) and do not necessarily reflect the official policy or position of any agency, employer or affiliation.