Re-framing Palliative Care:

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Nicole is a resilient 35-year-old who had been managing her Crohn’s disease for close to 20 years when she was diagnosed with colon cancer.

Nicole underwent a total colectomy and subsequently had chemotherapy and radiation treatment. Five months ago, she met with Dr. Jeff Myers and other members of the Palliative Care Consult Team at Sunnybrook Health Sciences Centre. “I have always been someone who’s active and informed about my situation, and yet I needed support and Dr. Myers and the team were all so easy to talk to and to confide in,” says Nicole. “My pain often felt like an obstacle but I was determined to resume a somewhat normal life.

The team reviewed with me different pain management options, never once being forceful or judgmental. They gave back to me a sense of independence but with a reassurance they were always there to support me.”

For each of us, the word “palliative” has different associations and meanings. In a health-care setting, when an individual learns they are being offered palliative care, most often their immediate thought is “end of life” care.

The Palliative Care Consult Team (PCCT) at Sunnybrook Health Sciences Centre is looking to shift this perception to include the role they provide in helping individuals and their loved ones continue to have quality of life, through physical management of pain and symptoms of advanced illness and side effects from treatment, and support through ongoing and individualized psychosocial and spiritual care.

“We are working in a sensitive and compassionate way to “re-frame” the term palliative to give a more active “intent to treat” outlook and to offer patients peace of mind in knowing all that can be done is being done to ensure their continued quality of life,” says Dr. Jeff Myers. “For those approaching end-of-life, the team is keenly focused on offering comfort measures and appropriate decision-making support for the individual and his or her family.”

The team is an inter-professional group of palliative care specialist physicians, nurses, social workers and chaplains.

With a mission to provide compassionate and comprehensive care, the team strives to support the complex needs of patients by providing inpatient consultation services.

In addition, the team leads outpatient pain and symptom management clinics four days a week at Sunnybrook’s Odette Cancer Centre and though the majority of patients are oncology patients, the team also supports any patients with advanced illnesses such as advanced renal, heart, or lung disease.

The team’s early involvement as consultants working with a patient’s treatment team allows for better understanding of individual pain and symptom management and psychosocial needs. “We work together to improve the patient’s quality of life and to help them find a “new normal” in their lives – or in the case of end-of-life care, for the patient and their loved ones to gain an embracing sense of comfort guided by expertise,” says Myers.

“Part of the “new normal” is about helping patients live the most meaningful life that is focused on well-being now, instead of trying to get “things in neat order” for the future or trying to resolve what is past”, says Elaine Rapp, one of the social workers on the team. ”

When a patient is diagnosed with advanced illness, we counsel and mediate with them and family members, to help them affirm what is lost, for example, loss of independence, and a changing role in the family. We all intuitively know our lives have limits and the idea of advanced illness brings a context in which patients and their families need specialized support.”

Psychological and social support includes connections with home nursing services, personal support workers, support groups, meal support and assisting the patient and family with insurance and financial issues. Nursing care assesses re-fitting a home for suitability for a patient’s new regimen of in-home care with community and hospital support. As part of spiritual support, questions of how a patient’s life has meaning and how have they had an impact on others is explored.

Patients and families are also supported to help make the most of coping and living in the moment with advanced illness whether longer term or in the patient’s final days.

“We were mentally prepared for our daughter’s passing. We knew she only had a short time left with us. What was most important for our family wasÉwe were not concerned about the amount of time we could be with her. More so we wanted to reduce as much of her pain as possible so we could make the most of our time together,” says Archie.

“Members of the team and Dr. Myers were always there for us and we knew she was in good hands.” Adds Archie’s wife, Audrey, “Knowing all was done that could be done, was of deep comfort to us, and to her. She never stopped fighting and her passing was the next part of a continuum of her being – beyond her physical place, and we are grateful to the doctors and nurses for helping her journey be as serene and as dignified as possible.”

In the area of innovation in pain and symptom management, the PCCT collaborates with other groups across Sunnybrook including the Rapid Response Radiotherapy Program. Pioneered at Sunnybrook, the program facilitates rapid access to radiation therapy for outpatients and inpatients requiring palliative treatment.

The team is also collaborating with the Department of Anaesthesia on novel innovative pain and symptom management approaches with anaesthesia. With a commitment to scholarly advancement through research and education in the field of Palliative Care, the team also provides a mentorship program for palliative care specialist Advanced Practice Nurses, and has developed core rotations for residents in Family Medicine, Psychiatry, General Medicine and Medical Oncology.