Palliative Care in Primary Care Settings
Originally published in December 2016
He lay on the bed, appearing to sleep comfortably. At times he had a racking cough but then he would settle again into a quiet tachypnea. When I took his hand, he roused, turned his head and gave me a weak smile and said, “I always liked you.” Then he closed his eyes and seemed to focus on breathing but kept my hand in his, though his grip was weak. One week earlier, I had seen him in the Emergency Department for urinary retention and he had needed an indwelling urinary catheter. He had told me good-bye that day because he seemed to think the catheter signified imminent death.
She sat in the chair with a non-rebreather mask on her face to receive the maximum amount of oxygen possible without using more invasive airway management. She had received strong antibiotics to attempt curative treatment but it had become apparent that her body was simply tiring out from her end stage COPD. On this day, she told me that she was done with interventions and said she was going to die that day. I told her I wasn’t sure about that but I assured her that we would help her to be comfortable. I ensured she had all the medications she would need on a regular and as needed basis to achieve comfort. She said goodbye to her family. She was gone the next morning.
“I don’t want to get addicted,” she said, as we discussed management of her pain. Her breast cancer had metastasized to her bones and her face was furrowed, wordlessly expressing her discomfort. She finally agreed to try hydromorphone at a small, regular dose as well as have that same dose for breakthrough pain every hour as needed. When I visited with her a few days later, it was gratifying to see her in a more relaxed position and her frowns replaced with smiles. Her palliative performance scale had improved dramatically just with controlling her pain. She would be able to continue living in her own home for many months to come.
The preceding vignettes describe some of my experiences in caring for people while providing palliative care. I am sure many family physicians and specialists can provide similar stories from their own practices.
I was primed to be involved in palliative care even before I entered medical school. My sister-in-law, Betty Ann, was a palliative care nurse and she had told me many stories about her work. I planned to have palliative care be part of my practice of medicine. I was able to do an elective in palliative care during my last year of medical school as well as during the second year of my family medicine residency. I did a post graduate year 3 called “Enhanced Skills in Rural Medicine” in which I had another 2 months of training in palliative care based on a palliative care floor in a city hospital. I was given a lot of autonomy and I had a great experience with the patients by applying all that I had learned and was learning about palliative care.
Now, over 10 years later, palliative care is regularly part of my practice of medicine. I am part of a local palliative care call group in Woodstock, ON, which covers community, hospice, and hospital inpatients. I also work part time in Emergency Rooms and I do locums in rural family medicine. I find that I am able to apply palliative care at some point in my daily work in whatever environment I may be at the time.
In Woodstock, we have a ten-bed hospice called Sakura House. We have five doctors who are part of the local palliative care team. All of us have family medicine training. We each take one week of call such that on weekdays, we are on call overnight from 6pm till 8am and on weekends, we are on call from Friday at 6pm till Monday at 8am. Family physicians in our community are being encouraged to be the primary provider of palliative care for their patients and to use the more focused palliative care physicians as consultants.
I am thankful for the opportunities to practice palliative medicine. It is rewarding to be able to sit and chat with the patients and hear their stories when they are still able to share them. It is a welcome change of pace compared to the Emergency room environment. It is also satisfying, and a challenge at times, to figure out what we need to do in order to get someone’s pain and symptoms controlled. It has always been my delight as a physician to be able to see the positive effect of a treatment on a patient. When someone is gasping for air and we are able to use various modalities to help them to be more comfortable, I am thankful to be part of that relief. It gives me a deep sense of accomplishment to see the person who is nearing their death resting comfortably in their bed with no appearance of distress in their body movements or facial expressions. I also enjoy being able to tell someone who is now receiving solely palliative care that they no longer need to worry about their caloric intake. They can eat when and as much as they want. Most of the time, they are no longer that interested in food and their appetite has waned secondary to their disease, but to allow them to have pleasure and control in some way, is gratifying. There are tough discussions at times to help patients and family members understand the reasoning behind food, or lack of it, as well as the reasoning behind which treatments do and don’t make sense in their current stage of illness. There are often many myths about palliative care and end of life care, which need to be addressed. There
is also a satisfaction in being able to explain the situation to families and to give comfort when it is sought and welcomed.
There are rare times when we do need to use palliative sedation but my intent is always to relieve suffering. I am concerned that palliative sedation is being given a bad reputation in the current conversations about physician assisted suicide and euthanasia (ie Medical Assistance in Dying or MAiD). In my experience, I use palliative sedation when there is no other option for controlling someone’s pain other than to help them sleep. Also, I use it when the patient’s palliative performance scale has deteriorated to the point that although they are mostly comatose, at times they may get quite agitated, causing severe distress to their loved ones at the bedside. In some ways, palliative sedation in this setting can be likened to when we give medications like atropine or glycopyrrolate to dry up retained upper airway secretions because the gurgling is distressing to the family. The patients may not be aware of what is happening, but we are also striving to help their families to be in comfort as they “watch with them.” It is also important for family members to have peaceful memories of the hours and moments at the time of the death of their loved one.
In the Emergency Department, I have to manage pain regularly, as well as nausea and constipation and many of the other symptoms that are treated in palliative care. Often patients arrive for whom I can use curative treatment as well as palliative measures and there are those who clearly need palliative care only. It is a delicate situation when I have conversations with patients and their families about end of life planning which would have been better conducted in a family physician’s office or in the oncologist’s office prior to the crisis which has brought them into the emergency department. I am grateful for the training that I have received in this area as it makes these difficult situations easier to manage.
There are many opportunities for obtaining training in palliative care as a practicing physician. There is a course offered by Pallium Canada called LEAP – Learning Essential Approaches to Palliative and End of Life Care. The website for Pallium Canada is www. pallium.ca. There are also links to youTube videos to help teach people about palliative care and help in broaching the topic of end of life care planning. The virtual hospice is also a great Canadian resource for lay people as well as health care professionals. The website for the virtual hospice is http://www.virtualhospice.ca.
There is a conference held in Montreal every two years called “The International Congress on Palliative Care” which is also an excellent opportunity to obtain palliative care education. The Clinical Master Class aimed at physicians, which is held on the first day of the Congress, has been a great help to my practice. The website for the congress is http://www.palliativecare.ca. Every year, the Canadian Society of Palliative Care Physicians holds an annual conference called “Advanced Learning in Palliative Medicine.” you can find more information at their website http://www.cspcp.ca/.
Finally, universities which have strong palliative care medicine groups will also often present courses. For example, McMaster University offers a course called “3 days in Palliative Care.” There is also a hospice in Victoria, BC which offers a course at least once a year. Their website is the following; http://www.victoriahospice.org/ courses/palliative-care-medical-intensive-course
Primary care is the optimal place for palliative care to be offered. Every family physician could (and, I would argue, should) have training in palliative care during their residency and be able to offer it to their patients. I have also noted many opportunities to obtain training once someone is in practice. Palliative care is part of caring for people across the age spectrum from birth to death. As Christian physicians, excellent palliative care is part of our calling. This is especially true now when we can provide a better way to deal with end of life care than to choose physician assisted suicide or euthanasia. I have enjoyed the opportunities to provide palliative care in my practice of medicine. I hope that others will be encouraged to consider adding or maintaining palliative care in their practice of medicine so that we can improve access to palliative care across Canada and provide a more hopeful approach to end of life.