Cancer is not one disease, and there are many potential courses it can take. But the diagnosis evokes fear, anxiety and turmoil in patients and their families.
“Some cancers are relatively slow, innocuous and treatable. Some are very aggressive,” says palliative care physician Paul Sugar. “The prognosis can vary from weeks to decades and, as such, the needs of patients vary widely.”
He suggests that discussions about the meaning of a specific cancer diagnosis can lead to questions around treatment, expected course of the illness and sometimes options regarding end-of-life decisions. Yet how – and when – should such a sensitive subject be broached?
“There is no formula, but most importantly, the patient has to be ready to have this conversation,” says Dr. Sugar. “We have to remember to approach the timing and manner of the discussion with sensitivity and adjust it to individual patients and their understanding, approach and emotional state. This awareness will help develop the trust that is needed in the relationship between patient, families and physicians.”
In his over 45 years of practising medicine, first in a family practice and then in a palliative care setting, Dr. Sugar has made it his priority to establish such trusted relationships. At some point, in his discussions with patients and families, he introduces the idea of “best-case and worst-case” scenarios.
“This can range from where we can treat the cancer, control the symptoms and give the individual lots of time, to a scenario where the disease can be very aggressive and shorten life,” says Dr. Sugar. “It’s also important to remind people that we’re there for them along this journey, whatever direction it takes.”
A patient’s autonomy needs to be respected – with patients’ wishes and needs forming the main goal for end-of-life care, believes Dr. Sugar. “I’ve had patients who want to die at home. I’ve also had patients who don’t want their families to witness the indignities that can come with final days. Everyone is different, and people should know there are many options to accommodate their preferences,” he says.
“We have the medications needed to control symptoms, be it pain (a fear for many), nausea, side-effects of chemotherapy, etc. All this is available through family doctors, palliative care physicians, nurse practitioners and cancer agencies.”
I’ve had patients who want to die at home. I’ve also had patients who don’t want their families to witness the indignities that can come with their final days. Everyone is different, and people should know there are many options to accommodate their preferences.— Paul Sugar, Palliative care physician, Paul Sugar Palliative Support Foundation and the Palliative Support Centre
Canadians are fortunate to have access to resources for end-of-life care at home – including home-care nursing, equipment and designated end-of-life nursing care – and hospices offer an alternative to home death.
“Availability of these resources can vary from region to region and when resources are stretched,” says Dr. Sugar. “We see people fall through the cracks when they don’t have the ability to access or navigate the resources that are available.”
In 2009, Dr. Sugar was approached by a young woman who was dying from cancer and wanted to be near her sister in Vancouver, B.C. “We both needed each other and were desperately looking for help,” wrote the patient’s sister about the experience. “We were over the moon when Dr. Sugar accepted Sheryl as his patient. [His] unequivocal love and dedication gave Sheryl the gift to live the remaining time of her life with family and die with dignity.”
Dr. Sugar, together with Dr. Marylene Kyriazis, a clinical pharmacist, provided medical and non-medical support, guidance and advocacy for this patient. And this inspired their vision that “no one endures serious illness without respect, dignity and comfort.”
Dr. Sugar and Dr. Kyriazis cofounded the Paul Sugar Palliative Support Foundation and the Palliative Support Centre in North Vancouver, B.C., with the goal to provide a one-stop shop for patients with serious illness and their families – from early diagnosis to end-of-life care, providing the continuity and human connection that is so needed.
Patients often need guidance and advocacy in addition to medical help, says Dr. Sugar, who estimates that he spends around 70 per cent of his time directly with his patients and 30 per cent with navigating what is often a stretched system to get people access to resources and investigations like scans or lab tests.
In addition to putting a strain on health-care resources, the coronavirus pandemic has made providing non-medical support – such as face-to-face meetings or group discussions – very challenging, says Dr. Sugar. “We try to stay connected via Zoom or FaceTime. It helps to some degree, but it’s not the same. When necessary or at imminent end of life, I make house calls.”
As he tries to maintain as much contact as possible during a time of limited social interactions, Dr. Sugar has noticed a heightened appreciation for human connections. “With COVID, the important things in our lives are becoming front and centre and the little stuff kind of disappears,” he says. “That’s also what happens at the end of life – it often brings a shift in perspective.”
This is what draws Dr. Sugar to his role. “It is so incredibly gratifying to try and give people the best care during their last years, months or days,” he says. “You really see their appreciation, and that is very fulfilling and restorative.”
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