Being with dying
Lu Marchand
Family physicians care for whole persons throughout their lifespans—they care for patients from beginning to end. Caring for dying patients is a normal and notable part of family medicine.
Providing primary palliative care—the care of persons with serious illness from the moment of diagnosis through the process of dying to the time of death—is an essential competency of all family physicians.
It involves being present, listening to patients’ stories, blending those stories with medical histories and establishing patient-centred goals of care that change over the trajectory of people’s lives, for however long they may be. It means treating symptoms that occur from terminal diseases as well as managing side effects of treatment using pharmaceuticals and non-pharmaceutical means, such as acupuncture, touch and energy therapies. It includes attending to advance care planning by establishing powers of attorney for healthcare and reviewing Physician Orders for Life-Sustaining Treatment forms.34–36
As trusted personal physicians, family doctors can fully attend to the needs of dying patients in their practices by implementing home visits, supervising hospice care and frequently communicating with patients and families. A biopsychosocial spiritual approach to care is extremely helpful when providing care for dying persons, as is the involvement of interprofessional teams of health professionals. Grief and bereavement care is also critical; hospice and family medicine team members and community-based support systems are especially helpful in this regard.37 38
Laura was a 70-year-old patient who presented for care in my rural family practice. She was frustrated because she had red eyelids, flushed skin, and severe diarrhoea. She had been to a famous clinic for a workup of her symptoms. An ophthalmologist treated her eye problem, a dermatologist her skin condition, and a gastroenterologist her diarrhoea. Nothing they recommended helped. ‘I’ve come to you to figure this out,’ she said when I first met her. I felt intimidated.
Driving home from work that day, Laura’s symptoms coalesced in my mind—carcinoid syndrome! She nearly died before starting a new treatment for the condition. Luckily, this treatment worked, and I gave her monthly injections for several years. She did well during that time, buoyed by a new partner, a very active social life and lots of dancing. After four years, the medicine no longer worked, and her dying time came. I did home visits and supervised her hospice care.
On my last visit with Laura, she expressed thanks for the years of life she might not have had had her carcinoid syndrome not been diagnosed and treated. She expressed her gratitude for my care as well. ‘Thank you, Dr. Marchand, for these beautiful years.’ We cried in mutual grief, love, and gratefulness. Eventually, I treated her symptoms to help make her comfortable, yet alert, prior to her death.
Laura taught me so much about living and dying well. I will never forget her.
This is what care for the dying can provide us as family physicians: deep meaning, purpose and the value of the simple yet profound relationships we have with our patients. Dying is a normal part of life—it can be a genuinely heartfelt experience for us, our patients, their families and the communities we serve (figure 7).39
Figure 7Holding the preciousness of life and end of life. Reproduced with permission.39
Readings
De Benedetto MAC, de Castro AG, de Carvalho E, Sanogo R, Blasco PG. From suffering to transcendence: narratives in palliative care. Can Fam Physician 2007;53:1277–9.
Loxterkamp D. A good death is hard to find: preliminary reports of a hospice doctor. J Am Board Fam Pract 1993;6:415–7.
Marchand L, Kushner K. Death pronouncements: using the teachable moment in end-of-life residency training. J Palliat Med 2004;7:80–4.