Talking about goals of care
When Vivian B.’s husband’s kidneys failed in 2013, the couple had no knowledge of kidney disease, dialysis or the effect both would have on his life. Although Gerry was already seriously ill with cancer and heart damage, Vivian says no healthcare provider ever asked him what he wanted or needed for the time he had left.
“My husband was so strong and independent,” she says. “If given the chance, he would have told the doctors he did not want to be totally dependent on others or to be in constant pain. But that is exactly how his life ended.”
Open and honest discussions
In 2017, the Ontario Renal Network introduced an initiative to encourage more healthcare providers to introduce early open and honest conversations with patients about their goals of care. Formalized, documented conversations ensure treatment decisions are aligned with patients’ wishes, values, beliefs and culture.
Goals of care conversations are valuable for anyone with a potentially life-limiting illness. They are particularly important for people with chronic kidney disease (CKD), as they will face critical decisions about their care. Early goals of care conversations give patients and their families the opportunity to learn about and discuss the risks and benefits of different treatment options. These include living and deceased donor transplant, home and in-centre dialysis, and conservative renal care.
As of February 2019, almost 60 percent of people starting dialysis in Ontario had documented goals of care conversations within the previous year. The Ontario Renal Network now recommends that goals of care conversations begin earlier, when a person is referred to a multi-care kidney clinic. This is usually when a person is at high-risk of kidney failure but before they need dialysis, transplant or conservative renal care services.
“These are difficult issues to face,” says Dr. Peter Blake, Provincial Medical Director of the Ontario Renal Network. “The time to learn about your options and think about what is important to you is in advance, not in the midst of a medical crisis.”
The Ontario Renal Network has developed several resources for patients, covering issues such as advance care planning, goals of care and treatment decisions.
Starting the conversation
Resources for healthcare professionals offer guidance in starting conversations about goals of care, discussing prognosis and introducing palliative care options. “These may be the most important conversations healthcare professionals will ever have with their patients,” says Dr. Blake.
Vivian wishes she and her family had received some counselling about how to talk with Gerry about the future. “We talked a lot about the past and our happy times, thinking that we were doing what we could to raise his spirits. Perhaps, with a trained healthcare professional, we could have found a way to have the goals of care discussion without causing him more distress and depression. It could have helped him make decisions that needed to be made.”
The Ontario Renal Plan 2019 – 2023 recommends that conversations about all aspects of care begin early and continue through all stages of the patient journey. These conversations should cover goals of care and symptoms that can significantly impact the patient’s quality of life. Shared decision-making among patients, their caregivers and their care team ensures treatment aligns with a patient’s preferences, values, family situation, culture and lifestyle.
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