The Ottawa Regional Palliative Care Unit door closed for me in 1995. I did not need to make a difficult decision to decide whether to stay or leave. I just needed to decide what work to do next. I continued to feel an inner pull toward palliative care. I knew there were no clinical palliative care positions available in the hospital system in Ottawa. I continued to hear the echoes of the words of my elderly family medicine patients and those at the palliative care unit asking me to take care of them at home. I remembered evaluations of the family medicine residents telling me they needed experience caring for dying patients in their homes.
I had no firm plans for other clinical work at this point. My priority continued to be the care of my father through his near end-of-life journey and be available whenever he asked for help, so I did not wish to commit full-time to an organization.
I decided to try to set up a community palliative care practice, starting as a solo physician caring for a small number of patients. When I made that decision, something unusual happened – it felt right! I had never generated positive feelings while making a life changing decision before. Still, my realistic side told me it would be impossible to maintain a regular practice consisting of patients with a prognosis averaging two to three months. I felt such a practice could not be sustainable. However, I began the work by establishing clear short-term and long-term criteria.
Short-term success would require:
Long-term success would require:
I set up personal criteria for my own well-being. If the practice forced me to cross these boundaries, I would stop accepting new patients and close out my community practice.
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Reviewing all these success criteria in my mind, I concluded that long-term success would not be possible. However, I did think I could fulfill my short-term goals of successfully caring for a small number of patients and families in their homes. Therefore, I dared to set up my ‘experimental’ solo community palliative care practice. I believed I could do this work for a few years.
In the beginning, I would not formally partner with any physician colleagues, community nurses or personal support workers in this experiment. I would use the home care resources already set up in the community through the Ottawa Home Care Program and work closely with the case managers. Family physicians, who referred patients to me for consultation, would continue to care for their patients along with me.
The first phase of this plan would last for two and a half years. In the first two years, I would accept patient referrals. In the last six months, I would continue to care for the patients in my practice but would not accept new patients.
In this hiatus I would have free time for rest, travel, and the assessment of my experience to determine if I should continue the practice for another few years. Two years would be long enough to assess the benefits and difficulties of a focused community palliative care practice managed solely with home visits.
The second phase of the plan would be designed during the six-month break in which I did not accept new patients. If I felt I was being of real benefit to patients and families delivering care in their homes, and if I was physically and psychologically able to cope with the stresses of this type of care, especially the constant ‘on-call’ requirement, then I would repeat the process for another two and a half years.
I continue to emphasize that I felt the chances of this plan being sustainable were extremely unlikely. However, I was confident that my commitment to my patients’ care would benefit them and their families, so it was worth the effort. I would also gain an excellent understanding of how to maximize the benefits of the available community resources and perhaps suggest how to reduce the barriers for future endeavours.
I was deeply committed to making this type of community palliative care work, so I put forth my best efforts to give my plan a chance of success. First, I needed to learn more about the science of palliative care. As I explained in earlier chapters, I did not have formal teaching in the specialty of Palliative Care. All my knowledge came from my Family Medicine background and my bedside experience caring for patients.
For six months before I started the clinical practice, I spent my time in the University of Ottawa library. I considered the significant symptoms patients were likely to experience at near-end-of-life (i.e., pain, dyspnea or shortness of breath, nausea, vomiting, bowel issues, delirium or confusion). I performed a literature search back through the years to the earliest research papers discussing these subjects and read all the documents by topic. I applied a critical appraisal tool, developed at the University of McMaster, to each paper to determine the validity of the research and the conclusions. I then summarized the valid conclusions from each validated paper I felt useful for the care of patients at home into computerized teaching presentations – one presentation for each symptom.
I was taking a risk starting a practice alone in the community in a format not tried before in Ottawa. I not only needed to have the scientific knowledge for symptom control readily available to guide the treatment of patients in crises, but I also needed the evidence with which to explain my approach to the treatment of these patients in case of sudden transfers to the hospital.
As an added benefit, if this project was going to be successful, I needed a scientific framework to help teach the community caregivers, nurses, personal support workers and family physicians caring for their patients but requiring support.
And so, it began. I started the trial in the form of a solo practice working as a Family Physician, limiting my practice to referrals for patients designated as requiring palliative care with no further active treatment to improve their life expectancy. I based my practice out of my home, providing care only through home visits, setting up a pager link with each patient 24 hours a day, seven days a week.
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Note: If a patient improved, I did not take them off my patient list. Instead, we discussed individually how best to continue their care:
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Referral Model:
For the practice to be viable, physicians needed to know the criteria for referrals. Once I was ready to start caring for patients, I set up a visit with each palliative care team representative in the Ottawa hospitals, including the Children’s Hospital of Eastern Ontario. (I had extensive experience with very acutely ill children during my time in Malawi and provided pediatric care for my patients at Family Medicine Program.
I felt I could care for children at near-end-of-life if families decided to care for them at home, with the backup of the palliative care team at CHEO.)
I explained to each palliative team that I was setting up a palliative practice in the Ottawa community. I planned to accept referrals based on the same criteria as the functional palliative teams in the hospitals for patients and families who wished to stay at home for near-end-of-life and had already been referred for home care support. I also visited the Palliative Home Care managers to explain my setup and my openness to referrals from Family Physicians if they needed help for their dying patients.
Patient/Physician Communication:
Patients needed to have access to my services 24 hours a day. When I first started in 1995, I used a pager and land line phones. A few years later, I purchased my first cell phone.
Patient Information:
When I started this practice, there were no computerized patient charts, so I obtained permission from each of my patients to review their hospital records of their medical history. I remained convinced that computerized patient records would become essential in the future, so I continued to work with my brother to optimize a system for my palliative patients to ensure I was able to provide records of each of my visits within the home and have these notes with me, easily accessible wherever I was in the city.
Emergency Support:
Realistically, I knew I needed support to cover the acute care of my patients for short intervals if I became ill or needed to go out of town. Serendipitously, a physician with an internal medicine background, graduated from Palliative Care Fellowship at the Ottawa Regional Palliative Care Unit, and who had worked several years on the palliative care team in the Ottawa Civic Hospital, decided to set up her community palliative care practice using the British model at the same time as I started my practice. She decided to set up an office in the community and work as a consultant hiring several community nurses to do most of the home visits for the patients. Although we had different approaches to the setup of our community practice, we shared similar clinical guidelines in the care of patients and families and could cover for each other, not regularly, but in case of an unpredictable crisis.
As I began this practice, there was no ‘universal’ form for Do Not Resuscitate in the Ottawa community recognized by the paramedics and the physicians. In 2000, Ontario instituted a “Confirmation of DNR Form” recognized by the Ministry of Health and Long-Term Care and the Ministry for the Paramedics. Over the next few years, a Chart in the Home was developed in the Ottawa district, including the EDITH (Expected Death in the Home) protocol. Within the EDITH package, there was the official DNR form.
