Chapter 17

By 2010, after fourteen years of providing community palliative care in the Ottawa area, I reached a crossroads.  I knew I was fatigued.  This type of work, though rewarding, was emotionally intense.  The need to be on call for much of that time and deal with severe crises, often in the middle of the night, was both physically and emotionally draining.

I took moments of quiet reflection to review my experiences. I realized I had succeeded in my short-term goals.  I sustained my practice, supported my patients and their families, and most of my patients were able to stay at home in comfort until their death.

Surprisingly, to me, I had also succeeded in fulfilling most of my long-term goals.  The Community Palliative Care Network (CPCN) continued to grow, attracting additional physicians and receiving enough referrals to maintain each physician’s practice.  With a total of eight physicians, the group was now organized by geographical areas across Ottawa.

On reviewing the present practice set-up, I realized my physician colleagues no longer needed my expertise to continue their practices in the long term.  We had similar goals in wanting to provide the best care for our patients, make our practices financially viable, and balance this work with our personal lives.  However, I had not achieved my other major goal of researching and validating the science of near-end-of-life care in the community.  Although it had remained important to me throughout the previous fourteen years, I had not found the time to achieve this goal while working full-time delivering palliative care and offering my services to help with teaching in the community.

Additionally, even though CPCN was very successful in caring for patients at home, with just over 80% of our patients achieving their wish to die comfortably at home or under our care in a residential hospice, my colleagues and I felt we could not convince our hospital-based colleagues that we were providing scientifically based patient care.  They felt all seriously ill patients with complex symptom control problems needed the expertise and supportive care only available within a hospital. We, the physicians offering care in the community, did not have the time, financial support, and expertise to evaluate our care using rigorous scientific methods.

Still, the referrals originating from our hospital colleagues kept coming our way.

We were asked to care for some of the hospital teams’ most complicated patients and trusted to provide the care for retired physicians, nurses, and family members.  It was evident we were doing something right.  The patients referred to us, no matter how complicated, rarely needed to be readmitted to the hospital.

Based on these reflections, I decided to continue to provide near-end-of-life care, but for a smaller group of patients and as a solo physician for the next ten years of practice (until I retired at age 70).  The focus of my near-end-of-life practice would be to provide the best care for my patients using my clinical experience and the tools I had developed; to fully involve my patients and families in the decision-making process throughout their journey; and to validate the approach to care with digital, real-time clinical data.  I hoped that together, my patients, their families, and I could find ways to assess their journeys at near-end-of-life and provide scientific proof to share with future patients and families to respond to their questions, “How long do I have to live?” and “What will the process of dying be like?”

I was also more convinced than ever that families provided the bulk of the near-end-of-life care for their loved ones.  Families were the ‘experts’ of their loved ones but often they were so frightened about what they would face.  If I could provide tools, explaining the science of near-end-of-life care, validated and easily understandable, future patients and families would have more confidence to add their own art to the process and live their unique most fulfilling journeys towards death.

The Community Palliative Care Network was dissolved at the end of 2009.  My colleagues divided themselves into two geographically based practices in west and central Ottawa.  I started my solo Near-End-of-Life (NEOL) practice taking responsibility for patients in the east of Ottawa, as well as accepting referrals throughout the Ottawa area from families for whom I had provided care for their loved one in the past.   I returned to the model of taking primary responsibility for 24-hour coverage, using part-time help from a former colleague from the University of Ottawa Family Medicine Program and a former colleague from the Pediatric Palliative Care Team.

With the goal of validating the science of near-end-of-life care, I collected the clinical data from each patient assessment into a unique digital database that my brother and I developed to support my community near-end-of-life practice.  My plan was to use this information to help in my day-to-day clinical care; to have the information from each patient easily accessible to their caregivers; and ultimately to review the accumulated data when I retired to verify the care I had provided.

Within the first few visits of receiving a new referral, I explained to the patient and family my approach to their care.  Then, I asked each patient and family if they wished to

discuss what their journey at near-end-of-life would be like, encouraging them to become an integral part of the decision-making.  If they agreed, I used my teaching card, Hierarchy of the Body, to explain the body’s natural path toward death.  Throughout my NEOL practice the graphic design of this card did not change significantly, but my use of the card to explain the process did change as I gained even more experience engaging patients and families more fully in the decision-making process.

In the following chapters, I have demonstrated the evolution of this teaching card by a series of graphics, each with a summary that patients and families can review at a quick glance, followed by a more extensive explanation of the issues I discussed at each step of the process.