In reading through this journal, you will have noticed a shift in terminology. I stopped expressing that I was providing community ‘palliative care’ and intentionally switched to describing my work as ‘near-end-of-life care’. In describing the journey of patients diagnosed with neurodegenerative diseases, then with patients referred to me with other non-cancer diagnoses, my referral criteria changed from the usual ‘three-month prognoses’ for the initiation of my community palliative care to accepting patients who had decided ‘against further curative treatment and had signed a DNR order’.
Reflecting on those experiences I realized that once the patient, family and I had addressed the life-threatening complications that led to the referral, allowing the body to rebalance itself, the final life-threatening complications were often delayed by months, or even a few years. During that time, these patients were extremely fragile. They still needed close assessment and support for their physical and emotional problems to achieve the best quality of life.
The conundrum was that they were still ‘palliative’, but they no longer fulfilled the ‘palliative criteria’ established by the medical community – they were not dying fast enough!
Added to the problem, as the patients felt better and started living their best lives under the existing conditions, many began to believe they were no longer dying. Often, they changed their minds about the DNR order – eliminating an additional criterion for palliative care disqualifying them from community resources.
I continued to be the primary link for these patients and families; I did not feel they were a burden in my practice; I did not feel their care needs were outside my expertise.
These on-going experiences clarified for me that it was the patients and their families who were at the center of the care team. My role was a link for information, support, and symptom control so they could make their own well-informed decisions. So, was the care I was providing really ‘palliative care’? I believe I was providing a ‘palliative approach’ to their care – especially when I was faced with a serious symptom crisis. But essentially, I was working as a family physician with a ‘focussed’ practice – all my patients being at varying points in their near-end-of-life journeys.
Use the information in this book, gifted to you by my patients. Learn the science of near-end-of-life to help you understand the signs of the dying process. The science will answer your question, “What will it be like?”
Familiarize yourselves with all the resources (e.g., family and specialist physicians, home care, hospice care, palliative care teams) available for your loved one in your locations. Optimize these resources for your specific problems at each step of the journey. Fuse your personal art of care to the science. Understand yourselves and your family, your strengths, and weaknesses. Adapt to the changing circumstances.
You and members of the family or personal care-giving team will be the first to observe the clues and premonition signs at the beginning of destabilization and understand the significance of the changes. These signs will be the clues to answering the question, “How long until our loved one will die?”
Above all, remember – there are no perfect solutions! (But there are elegant solutions!) Strive for everyone learning, working, and adapting together as a team through the journey, and cherish the precious time you have with your loved one.
Dr. Louise Coulombe
