After the world wars, the world observed a shift in medical care from the home to large modern hospitals. Medical care made incredible advancements with the discovery of potent antibiotics, and other new medications and treatments to control many human illnesses. Powerful medical technologies were designed to detect diseases quickly and accurately. New surgical techniques were developed to minimize damage to the body.
Essentially, we increased our overall longevity and started to live in the illusion that we could defeat death. Death was seen as a failure. Some believed we could avoid death if we concentrated all our medical resources on preserving life.
Realistically, with all our expertise, we could only temporarily put off death and enhance the quality of our lives. Stating the obvious, in the end, we all die. Many did not want to believe this truth. It was so much easier to focus on life, to put death in the background. But patients and families who were faced with this reality began to think about what was uniquely important to them as they reached near-end-of-life and prepared for that crucial part of their lives.
The SARS-CoV-2 (COVID-19) pandemic significantly accelerated this reckoning. We were suddenly faced with the stark reality of death; the truth was undeniable. The illusion we had come to believe about our ability to control our lives dissipated. Suddenly death was all around us; we had to face it daily. And we were NOT prepared. Suddenly we were forced to ask the critical questions as life was often measured in only hours, days, or a few weeks. “What is most important for me, my parents, my children?” Emotions swirled in our heads, so difficult to sort out because every day, the situation changed, triggering even more powerful feelings of fear, anger, sadness, loss, with dread of sudden impending death. We felt we had no control to prevent it. And even worse, suddenly, we realized just how important it was to be with family in our homes, in the hospital or in long-term care facilities to hold our loved one’s hands, to support and comfort them along the journey of near-end-of-life. Suddenly the need for public health isolation mandates took away these deep face-to-face connections.
We realized we needed to talk about death and the journey at near-end-of-life much earlier, to plan for this part of life well before facing death. We needed to understand what would likely face us through this journey, and what care was possible and beneficial for our loved ones in our community. Only then, by using this knowledge could we fuse it with our understanding of what was uniquely important to each of us to help achieve the best quality of life until death.
With the vaccinations for COVID-19, we started to regain a semblance of control over our lives and reduce our fear. But the experience of the last few years will stay with us. Dissecting our collective experiences will lead to discussions about healthcare funding and possible structures to provide medical care for everyone at near-end-of-life. As a society, we can start to move forward by learning as much as we can about the dying process to make the best, informed decisions for ourselves and our loved ones.
In 1995, I set up a practice solely focused on the care of patients for whom there was no further possibility of active medical care, and who wished to stay at home until they died. As a family physician patients told me, over and over that they wanted the best quality of life at near-end-of-life and for them that would be to remain at home by themselves or with family, to live their lives as they wished until their death. They understood they needed a link to medical care to discuss issues, to control any crises along the way, and to understand what they would be facing in terms of symptoms and length of life. They believed I could be that link – so they looked at me and asked, “Please come and care for us at home. We know it will be difficult, but trust us, we will be able to continue to live our lives our way with just a little help from you.”
I honestly did not believe it was possible to maintain such a practice. How could one physician keep up a medical practice with a set of patients who would likely die within a few months? But I did set up a community near-end-of-life practice in Ottawa. I continued the practice for twenty-four years. Obviously, I was wrong in thinking that community near-end-of-life was not sustainable! My patients and families were correct. If it was their wish, it was possible for patients to continue to live in their homes or within a community residential hospice or retirement home, cared for by their families, supported by community resources while facing death.
But it was (and continues to be) a difficult journey!
Over the years in my practice, I have been filled with more and more humility with each interaction with patients. I have learned that although I could provide for their care, success was achieved when my expertise was augmented with the knowledge, understanding and innovation of patients and families. It worked best when we all worked together
My patients and families gave me their trust – a great gift indeed! They explained their needs. They communicated their deeply personal goals of living the best lives possible while facing death. They took the time to listen to my honest explanations of the reality of their situation, their limitations and the possible solutions that might work to achieve at least some of their goals. Together, we made difficult decisions, reviewed the outcomes, and revised any flawed plans. I was continually awed by their gift, allowing me to use some of their precious time on this earth to discuss matters.
The Science of Near-End-of-Life Care:
Patients, families, physicians, and caregivers need to know and understand the body’s survival strategies at near-end-of-life.
The Art of Near-End-of-Life Care:
Patients and families need a link to professionals who understand their wishes and priorities, remembering the patient and family are always at the center of the care circle, and are willing to fuse the science with each unique patient’s goals.
During these conversations my patients would often become very sad wondering if they should keep trying to survive. They admitted that, at times, they felt they were an imposition, a burden on their families and society. I knew that nothing could be further from the truth.
I tried to be as honest as possible in responding to their concerns. I quickly explained what a great privilege I felt being allowed to care for them, to interact at such a deep level. I described how their journey was helping me in my work with my patients. I explained that I was able to use their positive and negative experiences to better explain to other patients and families what they would be facing and how they could find ways to improve their quality of life.
Whenever I was asked to give teaching sessions to families or caregivers, I would often use examples of my own family’s journeys as well patients’ journeys to illustrate my teaching points. Often, participants would come to me after the presentation to explain how some of my illustrations had touched them. Always, it was not what I said that made the difference; it was the illustrations I used that made them think about their own
experiences – the death of a friend, a sibling, or a parent. Often, they stated, they had felt guilty for years about how they had handled the steps of the journey. In reviewing the dying process with me, they were reassured that they had done the best for their loved ones even though they had not been perfect. They now felt at peace with the care they had provided and thought they would be better prepared for the journey with another loved person if needed.
I cautiously asked my patients if they would allow me to write about their experiences in a journal that I would give to patients, families, and caregivers in the future. The journal would be a way to help others, and, I suggested, the journal would be a tribute to them. It would be a way to help every patient living their lives in the face of death. It would prove that they were not a burden but an example, teachers and inspiration for future generations. Most were amazed by the thought that they could be positively affecting their families and the world in their struggle. I was surprised that most of my patients and families were very happy to allow me to write about their experiences. I have written this journal to prove I was being honest with them, and I honoured our relationship.
All our lives are unique. There is no story more important than another. There is overwhelming emotion at the near-end-of-life, and so often so little time. By daring to feel and speak deeply about what is truly important to us, well before our deaths, we find ways to understand each other much better and can concentrate at near-end-of-life on those factors most important to us.
I will share my journey with you, not because it is remarkable – actually, it is rather ordinary. I will share it with you because in asking permission of my patients and families to share their journeys with you, I must be equally transparent with my experiences at near-end-of-life, both personal and professional. While reading my journey, I hope it resonates with you, triggering you to examine your past journey and prepare for your future.
