Putting patients at the heart of end-of-life care

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New patient resources and clinical practice tools around end-of-life planning and care are helping empower heart failure patients in BC.

The first of their kind in Canada in terms of scope, the resources cover a broad spectrum including six symptom management guidelines with topics on fatigue, pain, and nausea; appropriate prescribing; psychosocial considerations; practice resources for heart failure clinical professionals; and an implantable cardiac defibrillator (ICD) deactivation guideline. This ensures patients with ICDs have timely access to ICD deactivation and are comfortable during their final weeks and days.

Developed as part of the BC Heart Failure Strategy, the goals of the materials are to improve dialogue between heart failure patients and their care providers, facilitate a dignified approach to heart failure end-of-life planning and engage heart failure patients as partners, while incorporating their unique values and beliefs.

“These tools help give patients the option to begin to talk about their values with respect to end-of-life planning,” said Dr. Sean Virani, Provincial Heart Failure Physician Lead at Cardiac Services BC.

“They also provide health-care providers with the confidence and guidance to be able to walk their patients and families through the process of end-of-life planning, including helping us recognize which patients should be offered this service, and how to begin to facilitate those discussions.”

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For patients, the tools provide them with the opportunity to have their voices heard and ensure clear communication so their wishes and questions are addressed.

Sonny Kisch, one of the patient volunteers who helped develop the material, knows this all too well. He has had a lot of experience in the health-care system both as a cardiac patient and as a family member – his father, his paternal grandmother, and his maternal grandfather have dealt with cardiac problems.

“It’s extremely important for a patient and their family to feel like they’ve been heard and that their concerns have been addressed.  Both the patients and their families need to understand and collaborate with the medical team about their treatment.” he said. “These resources empower patients, giving them a measure of control and involvement in their care and provide them with the knowledge to make informed decisions about their care.”

In 2013, a provincial working group comprised of patients, family members and care providers from across all health authorities in BC was created. The group collaborated to create a heart failure end-of-life consensus framework, practice tools and resources that heart failure patients and health-care providers can use to coordinate end-of-life care. The patient and practice resources were created based on current literature and recommendations from BC experts.

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“Every single resource was developed in collaboration with the patient working group,” said Bonnie Catlin, Provincial Clinical Nurse Specialist, Cardiac Services BC – BC Heart Failure Strategy. “Their input was critical in helping us determine what needed to be included and what would be meaningful for patients and their families as well as their care providers, while helping to convey the information in a sensitive and clear way.”

Sonny added some elements speak more to health-care professionals than patients but the documents can be used to help patients better understand procedures that occur during their treatment.

“From a patient’s perspective, the final result of this project is an extremely well-thought out, well planned and well put together set of resources that are succinct but not at the expense of information,” he said. “The shift to patient and family-centred care is empowering patients and their families or caregivers to provide more effective care after hospitalization.”

With a prevalence of more than 100,000 heart failure patients in BC alone, the need is great.

“The burden of heart disease is quite significant and many of these patients have one or more other diseases or conditions they’re also dealing with,” said Sean. “The tools are helping to provincially address the underserved heart failure patients with end-of-life planning and care.”

The tools have been positively received across the province since being completed in December 2014 and each health authority in BC is currently coordinating their regional roll out of the resources.

“The documents are innovative and really haven’t been thought about before. In fact, I’m not aware of any other provincially coordinated end-of-life ICD deactivation strategy that exists in Canada,” said Sean. “Because of their comprehensive scope, we’ve had great interest from other care providers in other hospitals, provinces as well as cardiac-related organizations across the country who want to use these resources. We post all of our care processes online so they are accessible to anyone who may want to use them.”

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The Provincial Heart Failure Strategy is lead and funded by Cardiac Services BC (CSBC) a provincial agency responsible for planning, coordinating and funding adult cardiac care in BC.

CSBC was integral in the establishment of BC Heart Failure Strategy, bring together a team of dedicated interprofessional heart failure experts committed to providing best practice, quality heart failure care, across BC. Their ultimate goal is to improve the health outcomes of British Columbians living with heart failure.

For more information on the BC Heart Failure Strategy and to access the resources, visit bcheartfailure.ca or contact Bonnie Catlin at bonnie.catlin@phsa.ca

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