Dr. Giovanna Sirianni talks with patients, and their families, about death.
As a family doctor practicing palliative medicine at Toronto’s Sunnybrook Hospital, she sits down with them soon after a diagnosis and answers questions about incurable cancers that she said have become more common in the last two years.
“Because people are [coming in] with more advanced disease, they haven’t really had a chance to understand the diagnosis and what’s going on,” he said.
As a result of clinic closures and inadequate symptom screening during the early months of the pandemic, hospitals have reported a surge in patients with late-stage cancers and other life-limiting illnesses since March 2020. The lack of early detection has brought Sirianni an influx of patients who are suddenly hit by a scary term: “palliative care.”
The term refers to any patient undergoing treatment for a life-threatening disease. An important component, Sirianni said, is determining patients’ particular end-of-life goals: what they hope to accomplish with the time they have left, and how these goals might align with their medical treatment.
But setting end-of-life goals involves accepting that the end of life is near, an acceptance that patients have been more hesitant to discuss during the global health crisis, he said.
“They’ve been hit with this diagnosis that’s so unexpected, and they’re so caught up in thinking about the treatment plan that it becomes challenging to talk about goals of care,” he told CTVNews.ca.
Sirianni explained that this type of response often differs from patients who have seen their disease progress from earlier stages, but said there is a wide spectrum of openness that people have to discuss what death will be like.
Often, “they feel like they’re on a treadmill,” he said. “[They think], ‘I’m in this treatment routine and do you want me to come down to talk about goals of care? I’m not ready for that. I just need to figure out when my radiation and chemo will be.’”
Treatment plans that focus on pain management and symptom control are an important part of the palliative conversation, but Sirianni believes it’s just as important for patients to have difficult conversations about death and therefore about life.
“I like to get a sense of the person who is there with me,” he said. “What is important to them? What do you like to do? What do they value?
Values, he said, can emerge through patients’ ultimate goals, such as getting to their daughter’s wedding and being able to walk down the aisle, or writing their family history before it’s too late.
As patients and their families grapple with the implications of life-ending illness, Sirianni suggests that palliative care offers an opportunity to reflect on an issue that might at first seem contradictory to people who are dying. : “Apart from the goals of care, what are your goals in life?”
SAILING ‘RUBLED WATERS’
The past two years have exposed a greater urgency for patients to discuss end-of-life care goals sooner, explained Dr. Hitesh Bhanabhai.
Bhanabhai, a palliative care physician at the McGill University Health Center in Montreal, often draws an analogy with his patients about his role as an end-of-life guide.
“The journey that a patient has toward the end of life is like a river, and I haven’t exactly been down that river before, but we’re in the canoe together. We don’t know exactly what’s at the end, but our aim is to make sure we don’t capsize the boat, even if there are rough waters ahead.”
The problem, Bhanabhai told CTVNews.ca, is that too many patients don’t know “how to navigate those waters,” a reality that arises when conversations about death don’t take place at the time of diagnosis.
“The transition can be very difficult. Patients may feel like they missed out on planning that might have happened earlier if they had a clearer idea of what was going on with their illness, if it hadn’t been forced on them at the end,” she said.
“It’s like a relay race where the last runner drops the cane on the ER floor and other people try to rush to pick it up,” Bhanabhai explained, referring to the rushed transition from ER treatment to palliative treatment. . careful, whose speed could make it difficult to have important conversations.
“Especially during the pandemic, it’s a pressure cooker and a lot of teams are running around like chickens with their heads cut off,” he said. “Patients feel abandoned and many of them are left out of the loop, not knowing what to expect.”
Bhanabhai also works at Palliative Care Residence Vaudreuil-Soulanges, a hospice in Hudson, Quebec. The building, backed by a small forest, is packed with open-concept rooms, spa services and a “homeness” that Bhanabhai says isn’t offered in the sterile, medical environment of hospitals.
If the end-of-life conversation happens late, Bhanabhai said options like moving to hospice, which allows for peace and comfort in a patient’s final days, might not be available.
“Unfortunately, because teams are so busy, important and clear communication with patients often goes to waste,” he said.
TALKING FROM A DISTANCE
With various health measures put in place during the pandemic, end-of-life communication has been complicated by physical distance, Shahar Amir said.
As a visiting nurse for SRT Medstaff, a home health care provider in Ontario, she sees herself as the “eyes and ears” of her palliative care team, visiting patients’ homes and determining what it takes to reach their goals at the end of the day. of life through assessments and records. Her visits allow her to convey relevant information to the interdisciplinary professionals involved in a patient’s care.
“Losing human contact,” he says, “was a game changer.”
Reflecting on the difficulties of the past two years, Amir said that palliative teams normally accustomed to visiting the patient at home had to resort to dispatching a single nurse, making it difficult for patients to build therapeutic relationships with other situated professionals. to help. to them.
“People had to learn as they went and improvise,” she said, pointing to Zoom calls and phone conversations that weren’t an effective replacement for the intimate nature of caring for someone in person. “In the clinical team there were no other options, so adapting was a necessity.”
In addition to the restraining barriers between patients and their palliative care workers, Amir said the same distance applied to family members, making discussions of end-of-life goals or instructions about resuscitations or compressions were even more difficult to perform.
“Often, I had to help patients talk to their families only through virtual measures,” he said, mentioning immunocompromised patients whose loved ones didn’t want to risk exposure to the virus.
This physical distance between dying families and loved ones was also witnessed by Dr. Hershl Berman, a palliative care physician who conducts home visits in Toronto. Recognizing that family is often an important value for those receiving end-of-life care, Berman encouraged patients to find new ways to connect with loved ones, even after death.
“If you are well enough and have grandchildren, write a letter for your wedding or for the birth of your first child,” he said, reiterating what he tells patients. “Have someone hold on to those [letters] and give them to them at the right time. That way, you’re building a legacy that stays with the person.”
LEGACY AND DIE
Berman’s suggestion falls into a specific category of palliative care: “legacy therapy,” a branch of end-of-life treatment that is being widely promoted by palliative care organizations across Canada.
Through therapy sessions and open dialogue about what patients want to leave behind after death, legacy palliative care guides patients toward creating something tangible, such as a memory box or audiotape, that tells their story and immortalize messages for your loved ones.
One of the Canadian hospices offering legacy palliative therapy is Heart House Hospice, an interdisciplinary organization that provides a wide range of end-of-life programs for terminally ill patients and their caregivers, deploying experts such as meditation trainers, art therapists and grief counselors. .
Kitrina Fex, executive director of Heart House Hospice, often stresses the importance of having programs like legacy therapy for dying patients that stretch beyond the limits of medical intervention.
“It’s always left to the consideration of what the patient wants,” he said, explaining the team’s process for allocating resources for home hospices in Brampton and Mississauga, Ontario.
“A lot of what comes up as a prognosis result of a terminal diagnosis is those psychosocial elements of patients thinking, ‘What does this mean to me? What does this mean for my family? Where am I going with this?’”
Fex explained that patients are robbed of these meaningful therapeutic treatments when open and transparent end-of-life dialogue is neglected.
“The pandemic indicated the importance of us getting in well before end-of-life care begins.”
Hospice, he said, isn’t just about someone’s final days, but an opportunity to bring comfort and meaning to an inevitable point in anyone’s life.
But when the patient is too close to the end of life, it can be more difficult to implement resources that align with their values in a short time, mainly because those values have not been adequately articulated before.
Fex and other end-of-life care experts see a lesson in this reality.
“We should have those conversations at the time of diagnosis,” he said.