Palliative Care Should Start at Diagnosis for HSCT Patients

Liam Davenport

March 27, 2019

FRANKFURT, Germany — Patients who require hematopoietic stem cell transplant (HSCT) should be introduced to palliative care at the point of diagnosis to be able to provide care that includes their personal as well as clinical needs.

This was the view put forward by Barry Quinn, PhD, Director of Nursing for Cancer and Palliative Care at Barts Health NHS Trust, London, UK, addressing a packed audience with an emotionally charged talk here at the European Society for Blood and Marrow Transplantation (EBMT) Annual Meeting 2019.

Palliative care should be included as early as possible in the care journey, as it "encourages us to move away from a medical focus of care toward a personal meaning of illness," he said.

"It's about allowing the patient to lead the way, to have courage to have those important conversations and make plans," he added.

Quinn said that it also involves working with the patient's family and community partners, and remembering the patient's wishes following his or her death, and thinking about the patient's family.

Not the End That the Patient Had Wanted

Quinn illustrated his talk with a poignant patient story.

Noel was no stranger to illness, with a history of ischemic heart disease and sarcoidosis, and having undergone a coronary heart bypass.

At 59 years of age, married with two young adult children, he was then diagnosed with multiple myeloma.

Over the next year, he continued to progress, despite undergoing a series of increasingly intensive treatments, leading to him to be admitted to the intensive care unit 13 months after diagnosis with bowel obstruction and a lower respiratory tract infection.

While Noel's symptoms included renal complications, cachexia, gastrointestinal disturbance, and fatigue, his personal experience was focused on self-esteem, loss, and relationships, Quinn commented.

Following discussions with his doctors, it was agreed that Noel's care would switch to a compassion-based approach, with chemotherapy ending and attention focused on getting him home.

Looking at the range of medications that Noel went home with, however, Quinn noted that "the interesting thing is that pain wasn't a major part of Noel's long-term care journey," as the doses that had been prescribed were small.

He continued: "What these medications do not actually address is Noel's fear, his sadness, his sense of loss, his sense of concern for his family, his sense of one day he will be no more."

"So this medication is a very small part of the end-of-life story," he said.

Quinn went on to recount that, unfortunately, neither Noel nor his family had been sufficiently briefed about what to expect.

Consequently, when he developed shortness of breath, his family could not cope and rushed him into hospital.

Against his wishes, Noel died in the hospital.

Lesson: "It's Not Either/Or"

Quinn commented that one of the main messages he wanted to get across is that palliative care is "not an either/or" and he added: "We use palliation in our practice all the time."

Patients living with advanced disease can experience pain from their cancer and treatment, alongside feelings of loss, separation, loneliness, and difficulties in relationships, he emphasized..

Even though there have been "great advances" in HSCT in recent decades, with patients living longer and managing their toxicities better, it remains a reality that some will die from either their disease or from treatment-related factors, he noted. So death is always a possibility, even when the patient is undergoing HSCT with the aim of cure.

Quinn asked the audience when palliative care should be mentioned for the first time to such patients.

On a show of hands, about half of the audience thought that palliative care should start some way along the patient journey.

However, Quinn said that it is applicable even "early in the course of illness, in conjunction with other therapies that are intended to prolong life," ideally at the point of diagnosis.

For him, the transition from aggressive treatment to palliative care is not about a "complete handover" but rather a "change in treatment goals."

Looking at how palliative care should be delivered, Quinn emphasized that patients often feel alone.

Nurses and healthcare practitioners, he said, should therefore pay attention, see beyond the symptoms, be a skilled companion to the patient even in their darkest hours, and show a willingness to learn.

To end his talk, Quinn quoted Sheila Cassidy: "The dying know that we are not God, all they ask is that we do not desert them."

Maintain Quality of Life

The session was co-chaired by Caroline Bompoint, transplant coordinator at CHU Montpellier, France, and Birgit Keinrath, a hematology nurse at Hanusch Hospital, Vienna, Austria. After the talk, both were approached for their reaction.

Bompoint told Medscape Medical News that she personally finds it "strange" to talk to patients about palliative care at diagnosis of the start of treatment.

"I'm doing all the pretransplant workup, and I feel strange if I'm so active in doing curative treatment but talking [at the same time] about palliative care with my patient," she commented.

Nevertheless, the palliative care team in her hospital introduce themselves to the patients at the point of diagnosis "because they want to introduce the idea in the mind of the patient and his family that the palliative team is not just for dying, it's also for sleeping, for comfort."

Bompoint therefore said while this is "a little difficult" in terms of her personal values, "I see this as a real improvement for the family and the patient."

Keinrath commented that the "most important" take home message for her was that "we have to think about the medication, and maybe sometimes we have to reduce it to maintain the patient's quality of end of life".

She also told Medscape Medical News that palliative care needs to be more of a focus at her hospital.

She said: "Everybody is hurrying, nobody wants to talk, and what I really want to improve is to bring everyone together — the physicians, the nurses, the psychologists, and the family and the patient."

For Keinrath, that is a step "in the right direction".

Quinn, Bompoint, and Keinrath have disclosed no relevant financial relationships.

European Society for Blood and Marrow Transplantation (EBMT) Annual Meeting 2019: NG18-3. Presented March 26, 2019.

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