Forming bridges with palliative care

Integrating a palliative care approach within cancer care


At times, it can seem that cancer is surrounded by powerful words and strong language. But one word that’s hard to come to terms with is “palliative.” For many, it implies the end of life, surrender. It’s a word that individuals living with cancer, their families and their health-care teams, struggle to raise in conversation.

“Make sure that the patient has family, friends or a health-care support worker with them when bad news is delivered so that the diagnosis can be processed together,” says Alice Campbell.

Yet it’s a word and a conversation that are essential to those whose cancer continues to advance and requires complex medical care, and for those who are facing the end of their life. According to the World Health Organization, palliative care is a dimension of care “that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

“While the definition of palliative care is supportive, in reality few of us are ever prepared to hear that our life will end,” says Bert Enns, a spiritual care specialist and project lead at the Tom Baker Cancer Centre and Calgary Zone Palliative Care Collaborative. “Life is precious. As health-care providers, we face a dilemma. How can we explore palliative and end-of-life care in a gentle and timely way to ensure that people have the necessary support through one of life’s most challenging transitions?”

Alice Campbell, a retired nurse who has been living with cancer for several years, remembers the first time she heard the term “palliative” in relation to her care, in 2009. “As I woke up from a surgical procedure, the nurse co-ordinator told me I was being referred to the palliative home-care team. I recall how frightening that was. No one had told me that I was dying.” The palliative care team was uniquely qualified to deal with a case as complex as Campbell’s. “I needed that specialized care but my goal was to recover,” she says. Recover she did. “That word, palliative, is loaded emotionally and for most patients and families, it indicates that their loved one is dying,” she says.

To her way of thinking, the word palliative covers intricate cancer care on a spectrum, including people who will graduate from care and those who are terminally ill and will progress toward the end of life with the support of a palliative team the entire way. When she was diagnosed with stage four non-Hodgkin’s lymphoma in 2009, Campbell’s doctor told her there was no cure. “It’s a very hard conversation when your doctor says, ‘This cancer’s not going away. You can count on it coming back but when it does hopefully we will have a new treatment.’ ” With the most recent reoccurrence, Campbell was told she could access palliative care again, if and when she needs it.

With years of nursing behind her, as well as her own cancer experiences, Campbell felt she had something to offer the Tom Baker Cancer Centre and the Calgary Zone Palliative Care Collaborative. “I’ve learned a thing or two after being around Tom Baker for so long and caring for very sick adults and kids. Death is not the worst thing that can happen to people,” she says. She has some suggestions for health-care professionals: “Give bad news in small, digestible amounts where possible, so that there is time to adjust. Make sure that the patient has family, friends or a health-care support worker with them when bad news is delivered so that the diagnosis can be processed together.”

According to Enns, recent research has identified the benefits of an early palliative approach. By working with individuals and their families, health-care professionals can help patients access a multitude of services for their physical, emotional and spiritual well-being. With this support, patients can make decisions that reflect their values and personal goals for living with cancer, including the last stretch of life. For example, incorporating a palliative approach into care can ensure that quality of life issues are integrated into discussions regarding treatments at the point of diagnosis. If treatments are not successful and cancer advances, appropriate supports are added to ensure symptoms are well managed and decisions regarding treatments continue to reflect an individual’s priorities and values. Patients need to be well informed about treatment options and services available at all points of their journey with cancer.

Enns is leading a two-year project, funded by the Alberta Cancer Foundation, to enhance the care for Tom Baker Cancer Centre patients and their families in the Calgary Zone. The project examines current services and identifies gaps and opportunities for best practices required to integrate an early palliative approach to care. Despite Calgary having one of the best-resourced and utilized palliative care programs in the country, there is recognition that cancer patients and their families are not always accessing these services in a timely manner.

Despite Calgary having one of the best-resourced and utilized palliative care programs in the country, there is recognition that cancer patients and their families are not always accessing these services in a timely manner.

In Phase 2 of the project, the committee will develop pathways that guide patients, families and health-care teams to ensure these conversations about care decisions and resources are proactive and enhance the integration of palliative services. To better integrate early access to palliative care, the committee will develop pilot opportunities to address current gaps. It will also develop educational resources that support health-care professionals to have these difficult early conversations.

The Tom Baker Cancer Centre and Calgary Zone Palliative Care Collaborative will review services used by more than 1,900 Calgarians who died from cancer in 2012. By reviewing this data, the project committee will better understand how earlier conversations about palliative care may impact overall support for patients in their last months of life including the need to use emergency or acute care services.

Like many families coping with advanced stages of cancer, Richard Erlendson, a communications professor at Mount Royal University, and his wife Marjory, who was diagnosed with peritoneal cancer, visited the emergency room on multiple occasions. Not only is this a risky, germ-filled place for people with compromised immune systems, but it’s also an expensive way to offer care that could be provided at home, especially if palliative care were involved. “Once we had a palliative home-care nurse supporting us at home, we would never have needed an ER visit,” says Erlendson. “We should have been in palliative care before we were.”

Although essential for Erlendson and his family, this care was not easy to access. “There were many positives about Marj’s experiences with the Tom Baker. The key meetings were well handled and we never felt rushed,” he says. Erlendson even speaks positively about the chemo unit: “We both really liked it. It was a happy and upbeat place.”

But the transition from independence to dependence did not go as well. From the moment of Marj’s diagnosis, the family knew her cancer was terminal. “There was something that should have kicked in so that palliative home care would have come to us. In retrospect we see this,” he says. Only because Erlendson had some prior knowledge of palliative home care gained from a neighbour, and through his communications work, did he realize that Marj required this service.

So he picked up the phone. Though he was told he could not self-refer, he stayed on the phone until he got a yes. He’s not optimistic that the average Albertan would have been so lucky. “Nobody referred us to palliative home care. We fell through the cracks.”

Although they were a family who had fallen into a gap in the transition phase of care, once they accessed palliative care, their experience transformed. “There are no words to describe the giftedness of that home-care nurse. She met my wife spirit-to-spirit,” Erlendson says. The nurse also interacted with Erlendson and his then-21-year-old son in different but equally amazing ways.

Palliative home care provided services that greatly reduced the burden of care on Erlendson and his family. For example, they connected the family with a pharmacy that delivered medications. This was a huge time and energy saver because Marj’s medications could change every few days.

Erlendson’s motivation for joining the project is a hope to be heard by policy-makers. “People want to die at home,” he says. “They do not want to die in hospital.” Marj’s palliative home-care nurse was with her when she passed away. “It may sound odd, but I refer to Marj’s last weeks and days as beautiful. It was beautiful caring from a gifted home-care nurse. Imagine if we had never accessed that gift? It would have been an awfully dark experience,” says Erlendson.

The challenge is clear. What’s the best way to introduce palliative care to ensure its entire scope is provided? Is it a term that can become acceptable and supportive without diminishing a patient’s sense of hope?

“We recognize we have work to do and are committed to finding better ways to integrate an early palliative care approach into all aspects of our cancer care,” says Enns.

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