Upon my return to Canada in 1982, I was exhausted. In my last year in Malawi, for six-months, my physician colleague took a well-deserved holiday back home to Scotland, leaving me as the only physician at St. John’s Hospital to take the call and make emergency decisions for all our patients. This extra responsibility had a greater long-term effect than I expected. I needed a hiatus without significant decision-making added to my regular activities of daily living. After six months of rest, I slowly started to integrate myself into Ontario’s Medical System.
I was recruited for my Family Medicine skills to evaluate patients on the waiting list for the Elizabeth Bruyere Continuing Care Hospital. The centre was about to open 100 new beds and had a waiting list of 200 patients. +The clinicians needed to prioritize the urgency of the admission of each patient. I was teamed with a very experienced social worker who had worked in the Ottawa area for years and had extensive knowledge of the community resources and the set-up of the home care system.
During the early 1980s, the old General Hospital in Ottawa was undergoing the finishing touches of an extensive renovation converting the former acute care hospital into a 200-bed long-term chronic care hospital (Elizabeth Bruyere Continuing Care Hospital) with an additional 25 bed unit for residential palliative care known as the Ottawa Regional Palliative Care Unit. When I arrived back in Canada, 100 chronic care beds were already fully operational.
My focus, as always, was on the science of the assessment of the patients including the physical changes in their illnesses and care needs since their names were put on the waiting list. After my evaluations were completed, I was able to take my ‘observer’ role and listen carefully to the social worker asking questions about the patients’ circumstances, family resources, and their day-to-day needs. I observed the social worker as he matched the possible other resources in the community to the patients’ needs making essential calls to streamline the process. In that process, with the information we had gathered, we were able to reduce the waiting list to just 100 patients – no one who needed admission was left without a bed.
For me, that was a wonderful reintroduction to the community resources in the Ottawa area. I was amazed at the ability of the social worker to find the ‘elegant’ solution for so many of the patients he assessed. What I learned in those six months would be invaluable to me in my future practice in Family Medicine.
Just as I finished this project, one of the staff physicians at the University of Ottawa Family Medicine Residency Program retired, leaving his university position vacant, and his small practice without a family physician. Without any effort needed on my part, the remaining staff physicians offered me his position. My automatic inner reaction kicked in. I did not generate any negative feelings, so I accepted the offer.
I quickly settled into the University of Ottawa Family Medicine Residency Program’s ‘family’. This was the same program of my own Family Medicine residency. I had worked with many of the support staff and physicians. All the group members, physicians, nurses, and clerical staff had the same approach to the care of our patients, and all wanted to find ways to achieve the best possible care for them. Many of these relationships have endured to the present.
This was a university training position. I was again focused on the scientific basis of the care we were providing. I Inherited a small practice from a long-time practicing physician whose practice had grown old with him. I was now responsible for the care of many elderly patients. I balanced that responsibility with the addition of new young families by remaining active in obstetrics. The program was also continuing to build a computerized system to collect patient information for day-to-day care and to support ongoing research into the best approach for patient care in the future.
In my practice during those seven years, I consolidated my approach to the care of my patients and the organization of their clinical records, and I learned more of the principles of family medicine that, as a group, we tried to communicate to our residents.
The practice of medicine in Ottawa was very different from my work in Malawi, most obvious in two areas: Obstetrics and Elderly care.
Obstetrics:
The care of obstetrical patients was “so much less stressful” than in Malawi, where I had played the role of consultant for complicated deliveries. I was now playing the role of a Family Physician providing uncomplicated obstetrical care in a hospital with obstetricians readily available. There were very strict criteria as to what Family Physicians were permitted to do. When complications occurred, an urgent referral was made to the on-call specialist who took over the responsibility for the care.
The nurses, who knew of the experience I had had in Malawi, often asked, “Doesn’t it bother you that you need to refer your patient for a minor complication that you could easily handle?” I would simply answer, “No, I am still part of the birthing process, my stress level goes down, and now I can do the best part of the birthing process by providing support to the mother, explaining what is happening, and observing the birth of a beautiful new life.
Elderly Care:
The care of the elderly was very new for me. In Malawi, the average life expectancy of the population was 45 years. The elderly patients who were presented to us often had chronic diseases or cancer with no possibility of cure. After we assessed them, they went back home to their villages to be cared for by their extended family.
After I had introduced myself to each of my elderly patients through office visits, I realized there were problems with the organization of these visits. I took a moment of quiet reflection and tried to find the ‘elegant solutions’ for the ongoing care of these patients.
First, these patients had been part of my former colleague’s practice for many, many years and their paper charts were very thick and very disorganized. I felt I could be much more efficient if I reorganized each chart and entered all the pertinent data on a spreadsheet awaiting entry into a computerized database in the future.
Second, during an office visit, all patients were usually asked to undress to undergo a good physical examination. For the elderly patients, who had struggled so hard to get dressed appropriately to come to the office this was a difficult chore. And then they had to dress again before going home. It was frustrating for them, it took so much energy, and it was very time-consuming for me to wait for them to go through this process.
So, I started to do more home visits for elderly patients and very frail patients at near-end-of-life. This approach proved beneficial for my patients and me. My patients always felt privileged to have a home visit from their physician. Logistically, they were always so pleased they did not need to dress formally for the visit, find transportation to the office and then back home. Observing that I had their summarized medical record and my assessment equipment with me, they were reassured that they were being evaluated as if they had travelled to the office.
The home visits were so different. I knew instantly how well they were coping by how they were dressed, how they walked, and the tidiness of their home. They readily presented a list of their complaints to assure me that my visit was useful for them.
After going through their list and a physical examination, I would ask them, “Is there anything you want me to do to address your issues?” They usually stated, “No, they are the usual problems. They have not worsened. I just wanted you to know about them.”
Over the years, each elderly patient I visited at home, at some point after they had developed trust in me, would quietly but firmly state. “I enjoy being at home even though I know that I am weaker. Even when I feel close to dying, I want to stay at home. Please, continue to visit me and care for me – I am not leaving my home until I die.”
Through this approach to my practice, I gained a much greater understanding of the power of care at home. Families grew through their complex journeys and taught me the lessons of how to live the best possible quality of life while facing death. Two patient journeys illustrate the extraordinary nurturing power of care at home with family and regular physician and home care visits.
Angela was 90 years old, living with her daughter, who worked as a nurse at our teaching hospital. She was a bright and highly functional lady, able to perform her essential activities of daily living. Angela presented to my office with a ‘white’ leg. I quickly diagnosed a clot in one of the main arteries in her lower left leg and referred her immediately to a vascular surgeon.
Because she was such a healthy 90-year-old, the surgeon wished to operate immediately to perform a bypass graft to re-establish the blood flow to the leg, thereby avoiding the need for the amputation of her leg. Unfortunately, during the surgery, the surgeon could not find a healthy vein for the graft and aborted the procedure.
A complication presented itself after the surgery. When vascular surgery is performed on a limb, a large part of the limb’s surface is covered with a sticky plastic sheet to minimize infection in the operative field. In cleaning up after the operation, a nurse quickly ripped off the plastic sheet, tearing off the skin of approximately 1/2 of Angela’s compromised lower limb. The chance of regrowing that skin in a limb with poor blood circulation was minimal. The likelihood of needing amputation of her affected leg was now even higher than before the operation. Indeed, within a few days in the hospital, the area became infected, requiring intravenous antibiotics. The wound was constantly weeping and would likely be reinfected at each dressing change. Preparations were made to amputate her lower leg.
One of the on-call surgeons visited while I was with Angela and her daughter, discussing the possibility of amputation. Before deciding to amputate, the surgeon asked my patient and her daughter to consider an alternate proposal. “Go home with home care providing daily nurse visits to assess, clean and dress the wound. Your daughter is a nurse. She could adjust the dressings between the nurse visits. Your doctor could visit every few days initially to assess the progress and make further decisions if the healing is not progressing.” He felt that she had the best chance of avoiding amputation in a clean environment at home with that type of individual care.
He was right. It took almost a year for that wound to heal, but Angela was able to keep her leg and lived comfortably at home with her daughter for several more years. Given the best environment possible, her body found a way to heal itself. It created an alternate circulatory path to send enough circulation into the leg to provide oxygen and nutrients, and cure the infection, thus avoiding any further surgery. She eventually did die quietly, in her home of other causes a few years later.
For me, Angela’s journey was a lesson in humility. I was reminded of baby Ester in Malawi. We created an environment as perfect as possible in their home and allowed the patient and family do the healing. I visited frequently and observed the benefits of care at home with a loving family caregiver, supported by community caregivers. It reinforced to me that the human body is a superbly sophisticated organism programmed to survive. Medical intervention is often beneficial, but care in a loving environment can allow the body to heal itself way beyond our expectations when active medical care is exhausted.
Marjorie was in her mid-fifties. She had been diagnosed with breast cancer a few years before I took over the practice. Marjorie had difficulty accepting the diagnosis, suffered from depression, and was granted long-term disability from her teaching job. She still had not recovered fully when she became my patient, but she ‘had turned the corner’ and had started to develop a deep inner strength within the first year.
I rarely needed to see her in the office for those first few years, but she liked to chat just to make sure she had the medical ‘connection’ she would eventually need. Her entire close family including her husband, three adult children and their children were also under my care. After five years, she developed a local recurrence in her breast, treated with radiation with good results. I had expected a recurrence of her depression, but she and her husband coped very well with this new complication. Both told me they had expected she would eventually die of her cancer. They had accepted that reality, and now they were trying to make the best use of their time.
Two years later, cancer recurred, now in her lungs, liver, and bones. She agreed to several courses of chemotherapy, but in discussing her decisions with me, she did so mainly for her family.
A few months before she died, we had another discussion. Marjorie had been offered another form of chemotherapy, but she had also planned a trip with her husband. She had already made her decision when she talked with me, but she always liked to see my reaction. Marjorie went on her vacation and both she and her husband had a wonderful time. In late November, with the last of her energy, Marjorie did all her Christmas shopping for her family and wanted so much to be at the family Christmas celebration to give presents to her children and grandchildren. The chances were very small, she was weakening very quickly, and so we set up a family meeting to discuss her condition and her wishes. All observed and understood the changes, knowing her prognosis was very short. I suggested perhaps they could move Christmas forward, just a few weeks to ensure she could celebrate with the family. All thought this was a terrific idea and made the preparations. I visited Marjorie at home the day before to ensure she was comfortable but as alert as possible for the celebration.
She lay on the sofa throughout the celebration and was completely involved in the gift opening as everyone came and thanked her, kissed her, and cried with her. After the event, Marjorie was gently helped to bed. She fell asleep and did not awaken the following morning, dying quietly in her sleep.
This was my first experience as a Family Physician in following a patient and family over an extended period – over eight years. It gave me a new insight into palliative care. As a student, I saw Marjorie deal with her first diagnosis and observed and helped with her distress. When I returned after my stay in Malawi, I was her family physician when her disease recurred and remained an accessible link with whom she felt comfortable whenever she was about to make significant decisions about subsequent treatments.
I also cared for her children and grandchildren and, therefore, I knew the family and their dynamics. I observed her grow through her experiences and start to make her own decisions more and more confidently. The last decision to stop any further active treatment and concentrate on what was most important in her life was the easiest. Her family had a wonderful experience just before her death. They created memories they would never forget as they continued with their lives. My role was a ‘link’ – available when needed, explaining the realities and supporting decisions. Occasionally I provided symptom control when required, but she required very little medication even when she was very close to death.
This patient made her own decisions about what was uniquely important for her life. Marjorie and her family faced their journey together.
After seven years of working in the University of Ottawa Family Medicine Program, I requested a sabbatical year. I wished to focus on learning about the delivery of Palliative Care in the community. I set up two-week visits at several hospices in England and in British Columbia, essentially playing the role of a ‘fly on the wall”, staying in the on-call rooms in the evening and nights. Then, I focused on the science of the approach to palliative care by spending clinical time at the Ottawa Regional Palliative Care Unit, responsible for the care of eight patients and participating in the creation of a two-week family medicine rotation in palliative care.
Intertwining of the science and delivery of palliative care:
The delivery of palliative care, as I learned in the ‘observer’ part of my sabbatical experience, reminded me of my experiences in Malawi. I relearned that the context and the location of the care played a significant part in how the care could be delivered. It was different from place to place, mainly because of factors not in the caregivers’ control, for example the geographical location, the social norms, the medical care delivery system, and its funding. I realized that this context was the most difficult part of palliative care to teach and develop strict criteria, but also essential for success.
I delved into the science of palliative care and realized that it was based on only a small body of knowledge, synthesized into a few enduring understandings. The human body is a very sophisticated entity that is coded for survival. The body shuts itself down in a very organized manner protecting its essential functions at the cost of the less critical ones. I realized, as I did in Malawi, the science is essentially the same from country to country, city to city, and home to home.
I knew before my sabbatical that families were important in caring for their loved ones at near-end-of-life, but now after my experiences in countries outside of Canada, in other cities within Canada, and while caring for patients admitted to a palliative care unit, I learned that families were the most critical part of the care. Families are the experts of their loved ones and should be, and must be, the central part of the care for the journey to be successful. My sabbatical experience reinforced the truth that every person and family is unique. Therefore, the plan of care for each must also be, in significant ways, unique.
My focus, as always, was on the science of the assessment of the patients including the physical changes in their illnesses and care needs since their names were put on the waiting list. After my evaluations were completed, I was able to take my ‘observer’ role and listen carefully to the social worker asking questions about the patients’ circumstances, family resources, and their day-to-day needs. I observed the social worker as he matched the possible other resources in the community to the patients’ needs making essential calls to streamline the process. In that process, with the information we had gathered, we were able to reduce the waiting list to just 100 patients – no one who needed admission was left without a bed.
For me, that was a wonderful reintroduction to the community resources in the Ottawa area. I was amazed at the ability of the social worker to find the ‘elegant’ solution for so many of the patients he assessed. What I learned in those six months would be invaluable to me in my future practice in Family Medicine.
Just as I finished this project, one of the staff physicians at the University of Ottawa Family Medicine Residency Program retired, leaving his university position vacant, and his small practice without a family physician. Without any effort needed on my part, the remaining staff physicians offered me his position. My automatic inner reaction kicked in. I did not generate any negative feelings, so I accepted the offer.
I quickly settled into the University of Ottawa Family Medicine Residency Program’s ‘family’. This was the same program of my own Family Medicine residency. I had worked with many of the support staff and physicians. All the group members, physicians, nurses, and clerical staff had the same approach to the care of our patients, and all wanted to find ways to achieve the best possible care for them. Many of these relationships have endured to the present.
This was a university training position. I was again focused on the scientific basis of the care we were providing. I Inherited a small practice from a long-time practicing physician whose practice had grown old with him. I was now responsible for the care of many elderly patients. I balanced that responsibility with the addition of new young families by remaining active in obstetrics. The program was also continuing to build a computerized system to collect patient information for day-to-day care and to support ongoing research into the best approach for patient care in the future.
In my practice during those seven years, I consolidated my approach to the care of my patients and the organization of their clinical records, and I learned more of the principles of family medicine that, as a group, we tried to communicate to our residents.
The practice of medicine in Ottawa was very different from my work in Malawi, most obvious in two areas: Obstetrics and Elderly care.
Obstetrics:
The care of obstetrical patients was “so much less stressful” than in Malawi, where I had played the role of consultant for complicated deliveries. I was now playing the role of a Family Physician providing uncomplicated obstetrical care in a hospital with obstetricians readily available. There were very strict criteria as to what Family Physicians were permitted to do. When complications occurred, an urgent referral was made to the on-call specialist who took over the responsibility for the care.
The nurses, who knew of the experience I had had in Malawi, often asked, “Doesn’t it bother you that you need to refer your patient for a minor complication that you could easily handle?” I would simply answer, “No, I am still part of the birthing process, my stress level goes down, and now I can do the best part of the birthing process by providing support to the mother, explaining what is happening, and observing the birth of a beautiful new life.
Elderly Care:
The care of the elderly was very new for me. In Malawi, the average life expectancy of the population was 45 years. The elderly patients who were presented to us often had chronic diseases or cancer with no possibility of cure. After we assessed them, they went back home to their villages to be cared for by their extended family.
After I had introduced myself to each of my elderly patients through office visits, I realized there were problems with the organization of these visits. I took a moment of quiet reflection and tried to find the ‘elegant solutions’ for the ongoing care of these patients.
First, these patients had been part of my former colleague’s practice for many, many years and their paper charts were very thick and very disorganized. I felt I could be much more efficient if I reorganized each chart and entered all the pertinent data on a spreadsheet awaiting entry into a computerized database in the future.
Second, during an office visit, all patients were usually asked to undress to undergo a good physical examination. For the elderly patients, who had struggled so hard to get dressed appropriately to come to the office this was a difficult chore. And then they had to dress again before going home. It was frustrating for them, it took so much energy, and it was very time-consuming for me to wait for them to go through this process.
So, I started to do more home visits for elderly patients and very frail patients at near-end-of-life. This approach proved beneficial for my patients and me. My patients always felt privileged to have a home visit from their physician. Logistically, they were always so pleased they did not need to dress formally for the visit, find transportation to the office and then back home. Observing that I had their summarized medical record and my assessment equipment with me, they were reassured that they were being evaluated as if they had travelled to the office.
The home visits were so different. I knew instantly how well they were coping by how they were dressed, how they walked, and the tidiness of their home. They readily presented a list of their complaints to assure me that my visit was useful for them.
After going through their list and a physical examination, I would ask them, “Is there anything you want me to do to address your issues?” They usually stated, “No, they are the usual problems. They have not worsened. I just wanted you to know about them.”
Over the years, each elderly patient I visited at home, at some point after they had developed trust in me, would quietly but firmly state. “I enjoy being at home even though I know that I am weaker. Even when I feel close to dying, I want to stay at home. Please, continue to visit me and care for me – I am not leaving my home until I die.”
Through this approach to my practice, I gained a much greater understanding of the power of care at home. Families grew through their complex journeys and taught me the lessons of how to live the best possible quality of life while facing death. Two patient journeys illustrate the extraordinary nurturing power of care at home with family and regular physician and home care visits.
Angela was 90 years old, living with her daughter, who worked as a nurse at our teaching hospital. She was a bright and highly functional lady, able to perform her essential activities of daily living. Angela presented to my office with a ‘white’ leg. I quickly diagnosed a clot in one of the main arteries in her lower left leg and referred her immediately to a vascular surgeon.
Because she was such a healthy 90-year-old, the surgeon wished to operate immediately to perform a bypass graft to re-establish the blood flow to the leg, thereby avoiding the need for the amputation of her leg. Unfortunately, during the surgery, the surgeon could not find a healthy vein for the graft and aborted the procedure.
A complication presented itself after the surgery. When vascular surgery is performed on a limb, a large part of the limb’s surface is covered with a sticky plastic sheet to minimize infection in the operative field. In cleaning up after the operation, a nurse quickly ripped off the plastic sheet, tearing off the skin of approximately 1/2 of Angela’s compromised lower limb. The chance of regrowing that skin in a limb with poor blood circulation was minimal. The likelihood of needing amputation of her affected leg was now even higher than before the operation. Indeed, within a few days in the hospital, the area became infected, requiring intravenous antibiotics. The wound was constantly weeping and would likely be reinfected at each dressing change. Preparations were made to amputate her lower leg.
One of the on-call surgeons visited while I was with Angela and her daughter, discussing the possibility of amputation. Before deciding to amputate, the surgeon asked my patient and her daughter to consider an alternate proposal. “Go home with home care providing daily nurse visits to assess, clean and dress the wound. Your daughter is a nurse. She could adjust the dressings between the nurse visits. Your doctor could visit every few days initially to assess the progress and make further decisions if the healing is not progressing.” He felt that she had the best chance of avoiding amputation in a clean environment at home with that type of individual care.
He was right. It took almost a year for that wound to heal, but Angela was able to keep her leg and lived comfortably at home with her daughter for several more years. Given the best environment possible, her body found a way to heal itself. It created an alternate circulatory path to send enough circulation into the leg to provide oxygen and nutrients, and cure the infection, thus avoiding any further surgery. She eventually did die quietly, in her home of other causes a few years later.
For me, Angela’s journey was a lesson in humility. I was reminded of baby Ester in Malawi. We created an environment as perfect as possible in their home and allowed the patient and family do the healing. I visited frequently and observed the benefits of care at home with a loving family caregiver, supported by community caregivers. It reinforced to me that the human body is a superbly sophisticated organism programmed to survive. Medical intervention is often beneficial, but care in a loving environment can allow the body to heal itself way beyond our expectations when active medical care is exhausted.
Marjorie was in her mid-fifties. She had been diagnosed with breast cancer a few years before I took over the practice. Marjorie had difficulty accepting the diagnosis, suffered from depression, and was granted long-term disability from her teaching job. She still had not recovered fully when she became my patient, but she ‘had turned the corner’ and had started to develop a deep inner strength within the first year.
I rarely needed to see her in the office for those first few years, but she liked to chat just to make sure she had the medical ‘connection’ she would eventually need. Her entire close family including her husband, three adult children and their children were also under my care. After five years, she developed a local recurrence in her breast, treated with radiation with good results. I had expected a recurrence of her depression, but she and her husband coped very well with this new complication. Both told me they had expected she would eventually die of her cancer. They had accepted that reality, and now they were trying to make the best use of their time.
Two years later, cancer recurred, now in her lungs, liver, and bones. She agreed to several courses of chemotherapy, but in discussing her decisions with me, she did so mainly for her family.
A few months before she died, we had another discussion. Marjorie had been offered another form of chemotherapy, but she had also planned a trip with her husband. She had already made her decision when she talked with me, but she always liked to see my reaction. Marjorie went on her vacation and both she and her husband had a wonderful time. In late November, with the last of her energy, Marjorie did all her Christmas shopping for her family and wanted so much to be at the family Christmas celebration to give presents to her children and grandchildren. The chances were very small, she was weakening very quickly, and so we set up a family meeting to discuss her condition and her wishes. All observed and understood the changes, knowing her prognosis was very short. I suggested perhaps they could move Christmas forward, just a few weeks to ensure she could celebrate with the family. All thought this was a terrific idea and made the preparations. I visited Marjorie at home the day before to ensure she was comfortable but as alert as possible for the celebration.
She lay on the sofa throughout the celebration and was completely involved in the gift opening as everyone came and thanked her, kissed her, and cried with her. After the event, Marjorie was gently helped to bed. She fell asleep and did not awaken the following morning, dying quietly in her sleep.
This was my first experience as a Family Physician in following a patient and family over an extended period – over eight years. It gave me a new insight into palliative care. As a student, I saw Marjorie deal with her first diagnosis and observed and helped with her distress. When I returned after my stay in Malawi, I was her family physician when her disease recurred and remained an accessible link with whom she felt comfortable whenever she was about to make significant decisions about subsequent treatments.
I also cared for her children and grandchildren and, therefore, I knew the family and their dynamics. I observed her grow through her experiences and start to make her own decisions more and more confidently. The last decision to stop any further active treatment and concentrate on what was most important in her life was the easiest. Her family had a wonderful experience just before her death. They created memories they would never forget as they continued with their lives. My role was a ‘link’ – available when needed, explaining the realities and supporting decisions. Occasionally I provided symptom control when required, but she required very little medication even when she was very close to death.
This patient made her own decisions about what was uniquely important for her life. Marjorie and her family faced their journey together.
After seven years of working in the University of Ottawa Family Medicine Program, I requested a sabbatical year. I wished to focus on learning about the delivery of Palliative Care in the community. I set up two-week visits at several hospices in England and in British Columbia, essentially playing the role of a ‘fly on the wall”, staying in the on-call rooms in the evening and nights. Then, I focused on the science of the approach to palliative care by spending clinical time at the Ottawa Regional Palliative Care Unit, responsible for the care of eight patients and participating in the creation of a two-week family medicine rotation in palliative care.
Intertwining of the science and delivery of palliative care:
The delivery of palliative care, as I learned in the ‘observer’ part of my sabbatical experience, reminded me of my experiences in Malawi. I relearned that the context and the location of the care played a significant part in how the care could be delivered. It was different from place to place, mainly because of factors not in the caregivers’ control, for example the geographical location, the social norms, the medical care delivery system, and its funding. I realized that this context was the most difficult part of palliative care to teach and develop strict criteria, but also essential for success.
I delved into the science of palliative care and realized that it was based on only a small body of knowledge, synthesized into a few enduring understandings. The human body is a very sophisticated entity that is coded for survival. The body shuts itself down in a very organized manner protecting its essential functions at the cost of the less critical ones. I realized, as I did in Malawi, the science is essentially the same from country to country, city to city, and home to home.
I knew before my sabbatical that families were important in caring for their loved ones at near-end-of-life, but now after my experiences in countries outside of Canada, in other cities within Canada, and while caring for patients admitted to a palliative care unit, I learned that families were the most critical part of the care. Families are the experts of their loved ones and should be, and must be, the central part of the care for the journey to be successful. My sabbatical experience reinforced the truth that every person and family is unique. Therefore, the plan of care for each must also be, in significant ways, unique.
After my sabbatical year, I was offered a position at the Ottawa Regional Palliative Care Unit as a full-time physician with clinical responsibilities caring for a group of admitted patients and teaching family medicine residents during a mandatory two-week rotation. Again, I felt no positive feelings pointing me in that direction, but again, I had no negative feelings, so I accepted the offer. I hoped that I would learn more about the science of palliative care by reviewing the medical journals and participating in some of the studies being done within the unit.
But for the next two years, the most significant part of this experience was looking after the patients – the bedside experiences. The unit was very busy, with frequent admissions of critically ill patients requiring symptom control. Most of the conversations with my colleagues were about the day-to-day delivery of palliative care to these patients.
The caregivers, physicians, nurses, and social workers took a team approach to each patient, involving the family in the discussions and decisions. I enjoyed the experience. Often, we helped the patients and families in very positive ways. Still, I learned again our goals and expectations, despite best intentions, did not always succeed as we expected. We found there were personal, administrative, financial, and communication issues that could severely interfere with the provision of care.
But when we recognized the possible problems and admitted to our shortcomings, we continued to improve our delivery of medical care. I substituted my notion of finding the ‘elegant’ solution for each patient with the concept of integrating the best ‘science’ of care with the ‘art’ of the delivery of this care. Two journeys, Ella’s and Mary’s, will illustrate this concept.
But when we recognized the possible problems and admitted to our shortcomings, we continued to improve our delivery of medical care. I substituted my notion of finding the ‘elegant’ solution for each patient with the concept of integrating the best ‘science’ of care with the ‘art’ of the delivery of this care. Two journeys, Ella’s and Mary’s, will illustrate this concept.
Ella had been admitted to the Palliative Care Unit with extensive lung cancer, causing severe pain in her chest and shortness of breath. Her prognosis was felt to be less than a month and she needed symptom control. Therefore, she clearly fulfilled the criteria for admission.
Framework: When palliative care services were first envisioned, a working framework was needed to explain why the services were necessary and to convince hospitals and community officials to support this new service financially and with committed professionals.
Criteria: Initially, the criteria to qualify for care included patients with a cancer diagnosis with a prognosis of about three months. Even with these restrictions, there were barely enough resources available so expansion to include other patients could not be accommodated.
Specialty Designation: In the evolution of palliative care, program administrators had to prove palliative care was a ‘specialty’ to obtain and maintain ongoing funding as a recognized University of Ottawa Program.
Community: On the practical side, for palliative care to grow, it had to expand into the community. But there were very few palliative care physicians in Canada. There was a recognition that family physicians should be knowledgeable in the complexities of death and dying and provide most of the community’s near-end-of-life care. However, family physicians were busy with their regular office practice, few teaching sessions were available to explain the principles of palliative care and no one to demonstrate the art of adjusting these principles to community care, often in patients’ homes.
Resources: There were other ongoing and very complicated issues in the clinical practice of palliative care within specialized units; within residential hospices, and in the home care programs providing resources in the community to help patients stay at home.
After a few weeks, we controlled her symptoms well. She could mobilize in a wheelchair and eat well. She now needed only personal care and her prognosis would likely be longer than three months. Therefore, she no longer fit the admission criteria. The team was forced to start talking to the family. Her children were adamant that they would NOT take their mother home. They felt she was too sick and needed to stay within the unit. The social worker set up a family meeting to discuss the issues. Before the meeting, I asked Ella what she wanted. She clearly stated that she wanted to go back to her home.
At the meeting, Ella, her three adult children, her primary nurse, the social worker, and I were present. I could feel her children’s anger immediately when I entered the room. After introductions, I sat quietly and asked each of the children, one at a time, to explain their concerns. Each had excellent reasons why their mother needed to stay at the Palliative Care Unit. Every point was valid and very well presented. Each finished their talk by stating they would NOT change their minds. While listening, I tried to figure out the best compromise. I realized that each child, near the end of their explanation, looked at their mother and clearly stated, “I love you, I would take you home if I had a precise time limit, perhaps three months, to your death, allowing me to make plans with work, but everyone knows that no one can give that kind of prediction.” When everyone had finished, I asked Ella to tell her children what she wanted. She clearly stated she wanted to go home.
I looked at them all and quietly summarized what I observed and understood from their explanations. They loved their mother and wanted what was best for her. I agreed that one of the most challenging realities of caring for a loved one is not knowing “How long?” I asked them all, “How can we solve this complex problem together in a way that would be acceptable to everyone?” The children and their mother were suddenly much calmer. They felt that someone had listened to them and understood the problem.
In this instance, I was the admitting coordinator on the Palliative Care Unit. I had the authority to decide who should be admitted and when. I decided to use this power to add the ‘art’ to our care of this patient and her family. I explained to the family that, as the admitting officer for the Palliative Care Unit, I could promise them that I would readmit their mother in three months. I added that, of course, if she deteriorated and they could no longer cope with her needs at home, their mother would be a priority for earlier admission. They were shocked, quiet for several minutes. Then, after looking at each other, they agreed to take their mother home. Ella was elated.
They fulfilled their commitment to care for their mother at home for almost three months. Ella stated she had such a wonderful time with her children. A few days before her scheduled readmission date, she experienced a significant crisis. Her symptoms were still well controlled with her medication regime, but she became bedridden, confused and her children did not have the resources to continue her care at home. The unit had a bed available, and Ella was admitted the same day. This time she did not object to returning to the Palliative Care Unit. She died a few days after her admission. Her children were so pleased they had been able to give this gift to their mother.
This ‘three-month prognosis’ criterium for palliative care was essential to obtain the financial backing for palliative care in the community, but problematic, leaving patients without a simple solution when palliative care succeeded through symptom control leading to the patient’s stabilization. We were so pleased when we observed a very fragile patient feeling better due our specialized care. We were so worried for the patient because now they no longer fulfilled the criteria for palliative care. We knew that they would quickly destabilize without access to this care. It was a conundrum. They were denied the care because they were not dying fast enough!
Still, if the programs did not have the financial backing, there would not be a palliative program for any of the patients. The ‘art’ of these cases was to review the resources we had, anticipate the barriers and work with the authorities and families to find the best practical solution in each situation.
Our palliative care team had criteria for success. We believed in the criteria and strived to achieve them. We were distressed when we did not achieve our goals, worrying that our patients suffered because of our failure. Sometimes patients had very different goals than our team did. Sometimes we did not take the time to discover these differences. That discrepancy could quickly lead to our failure, despite what we thought were our best efforts.
Mary’s journey (summarized from an article I had written for the journal, Humane Medicine[1]) illustrates this situation.
Mary was admitted to the Ottawa Regional Palliative Care Unit after a long illness with ovarian cancer complicated by numerous bouts of bowel obstruction. Mary was reluctant but agreed to the admission, only for symptom control. She was sure she could then return home. But her hospital care team had told us that Mary had “come to terms” with her illness. It was her husband who was not so realistic. During her last hospital stay, Mary had bouts of cardiac palpitations that settled only with aggressive intravenous medications and electrocardiogram monitoring. Both Mary and her husband were worried we would not be able to manage this symptom. Right from the beginning, our team had unknown gaps in understanding our role in Mary’s care. As well, Mary and her husband did not trust that we could manage her life threatening palpitations.
Mary immediately won over the whole team. She was gracious and did not complain but, we observed she was very ill. We learned quickly that she pleaded for help only with her large intense eyes. Despite her suffering, she continued to be sensitive to the needs of her caregivers, constantly asking about their feelings during her care.
Within a few hours of admission, Mary had a bout of severe cardiac palpitations, causing a choking sensation. We quickly brought the episode under control by reassuring her, performing a carotid massage, asking her to perform a Valsalva maneuver (hold her breath for a short while), and adding a small dose of a tranquillizer orally. With the quick control of the episode, we gained a little trust. But we still did not realize she did not think her death was imminent.
In addressing her abdominal pain from the recurrent bowel obstruction, we explained the issues to Mary and her husband, the possible approaches and always involved them in the decisions. Within a week, Mary had improved and restarted small meals. She was so hopeful she would return home soon. Now, she was sure she was not dying.
Just before discharge, Mary developed a complication that changed everything. Her cancer surrounding her bowel caused a backup of food and fluid into her stomach, stretching its lining. It also invaded and weakened the lining of her bowel. Suddenly these linings ripped open creating a passage from her stomach to her bowel to her vagina. Stomach acid poured into her vagina whenever she ate, causing severe burning
The team tried everything to stop the burning: creams of every type and medications to decrease the acid production. But nothing was effective. Mary would not take the medications because they made her too sleepy. She would not stop eating, so the acid flowed out after each meal restarting the terrible burning. I watched the nurses gently care for Mary. She felt so much better after a bath. The nurses were so pleased she finally had relief. Still, by the time it took to walk back to bed, the terrible burning restarted. I watched when Mary and the nurses cried in each other’s arms. Our failure to make Mary more comfortable was evident to the whole team! I would go home many evenings with Mary’s pleas ringing in my ears, “Please make it stop! Please take the burning away! Please let me die!”
Although we thought our attempts to help Mary failed, I realized two simple measures effectively reduced the acid flow and, therefore, the pain. First, when we positioned Mary on her back in bed with a pelvic tilt, her knees bent over a pillow the flow of acid just stopped; the pain immediately subsided. Second, if Mary did not eat solid foods but just drank fluids, the pain stopped. But both of those measures were not acceptable to Mary.
On taking a moment of quiet reflection, now confident we could make Mary comfortable with these simple measures, I finally realized an essential part of our problem. Mary, her husband, and her children had not “come to terms” with the seriousness of her illness.
When we made Mary more comfortable, she believed that the fistula had closed. She started thinking again about going home and slowly increasing her diet. She felt again that she was not dying. It was a cycle. When the pain peaked, Mary would cry to be allowed to die. As soon as the pain was controlled again, Mary was back to making plans about living normally. I would observe her trying to restart eating before we gave her permission, knowing that the excruciating pain would resume. She wanted so much to live, and in her mind, to live meant she ‘had to eat.’ And to enjoy her life, she had to be able to walk about.
One of the nurses, while caring for Mary, asked what was bothering her the most. “Was it the pain or the indignity of the discharge?” Mary’s answer confirmed what we were beginning to understand. She stated, “The pain of leaving this world.”
Our pain, frustration, and guilt stemmed from not controlling Mary’s pain in a way that was acceptable to her. But Mary’s goals were not the reality. Because the pain was so severe and needed all our attention, we lost sight of that reality. If Mary had not developed the hole through which the acids exited her body, she still would not have been able to nourish herself. She had a complete bowel blockage. We would have had the conversation earlier about this reality, and it would have been more evident to Mary that her life expectancy was very short.
We thought we were failing Mary. I became acutely aware of my inadvertent near failure in Mary’s care one Friday when I visited to notify her of who would be covering for the weekend. She looked up with fear in her eyes and pleaded. “Please don’t go.” I responded spontaneously, with tears welling in my eyes, and replied, “I haven’t been doing very well in making you feel better.” She answered, “I trust you. Please don’t go yet. Just stay here for a minute and hold my hand.” Her husband, seeing my discomfort, added, “Doctor, you and the nurses are trying, and it’s obvious that you care, and that is all we can expect of you.”
While we were trying to live up to our perceived goals, we did not realize that we were giving Mary and her husband exactly what she needed – our attention and the knowledge that we cared! We almost failed her by being hesitant to visit as often because of our guilt.
As Mary weakened, any pain was easily controlled because she had no energy to eat. Now that we listened to Mary and her husband, we learned about their thinking. She readily admitted that the fear of losing her life was much worse than the physical pain of the burns. Mary’s husband told us that Mary had spent her life helping others. Even in the last few weeks, she observed the pain in the nurses eyes when they could not make her comfortable and the fears of her family seeing her weaken. Despite her own pain, she still felt useful by trying to support the staff and her family.
Her husband was afraid to talk about his feelings. He was not ready to let his wife go, yet he found the courage to be with her almost constantly, to help her in any way he could. He made the nurses and me laugh when we would rather have cried. He was now able to share his experiences with many of the families on the unit and they all felt comfortable sharing their pain and grief with him. Then, on Mary’s last day, he was indeed able to speak with her and say, “Yes, it is OK to let go” and mean it.
In looking back over my two years working at the Regional Palliative Care Unit, I strived to better understand the patients and families much earlier in the course of their illness.
These two journeys illustrate the need to develop the concept of integrating the best ‘science’ of care with the ‘art’ of the delivery of this care. Why do I think my approach was effective while I was working at the Regional Palliative Care Unit? Towards the end of my time on the unit, several of my patients, would look at me and say, “You know, I am much better than when I was admitted to this Palliative Care Unit. Thank you for that. But, you know, you could just quit this job – there are many physicians here. I want to go home now. You could come and take care of me at home.”
[1] Coulombe, L. A Patient with Total Pain: A Lesson in Humility. Humane Medicine: A Journal of the Art and Science of Medicine. Nov. 1995. Vol. 11, No. 4: 157-161.
