Empowering Patients to Live Fully: The Role of Palliative Care
Monday, May 8, 2023
This week is Palliative Care Week (May 7 to May 13) and the goal is to raise awareness about the significance of providing compassionate care and prioritizing the comfort and dignity of those facing life-limiting illnesses.
I reflected long about how I was going to use my platform and position to raise awareness about the importance of palliative care this week and beyond. Often misconstrued as end-of-life care, palliative care is patient-focused and aims to provide patients with life-limiting diseases the care and support they need to live comfortably and fully, in accordance with their wishes. Rather than presenting statistics highlighting the shortcomings of our healthcare system or impersonal examples of the importance of palliative care, I opted to share the story of Elisa, the aunt of one of my team members. Her story continues to serve as a testament to the impact a human life can have, even after it has passed. I hope by sharing Elisa’s story you gain a better understanding of what palliative care is and why it is an important part of the care plan for patients with life limiting disease.
In 2018, Elisa, a vibrant 51-year-old woman whose personal philosophy was carpe diem, was diagnosed with advanced lung cancer and was experiencing severe pain and discomfort. Her palliative care team consisting of a doctor, nurse, and social worker was brought in to assess her symptoms and provide her with the support she needed and desired. Elisa knew that sharing news of her health condition and diagnosis with her family would cause everyone despair, panic, and anxiety. She knew her family would fixate on her impending final moments instead of the moments she still had the chance to make the most of, and she was determined to make each of those moments count. So, she chose to keep her diagnosis to herself.
Her palliative care team worked with her and her oncologist to adjust pain medications and develop a plan to manage her symptoms. A woman of faith, Elisa’s palliative care team also provided her with emotional and spiritual support, which helped her navigate difficult decisions and provided counselling to address the psychological impact of the illness and her choice. Her goal and that of her palliative care team was to improve Elisa’s quality of life by reducing her suffering and enhancing her comfort and well-being.
Elisa was determined to live what life she had left as fully as possible and this included living, laughing, and being with family who didn’t see her as her disease, but in the way she wanted them to see her and remember her: as a woman who loved life.
She did so with the help of palliative care. Her team provided her with the support and resources she needed to manage her symptoms, which allowed her to focus on what mattered most to her: spending time with her loved ones and enjoying the simple pleasures in life. With the guidance and expertise of her palliative care team, Elisa was able to live the final chapter of her life on her own terms, with dignity and grace. This choice should be afforded to all of us.
Her story highlights the transformative power of palliative care and serves as a reminder of the importance of ensuring that everyone has access to this type of care and support when they need it most.
Some may not agree with Elisa’s decision not to share her diagnosis with her family, but whether you would or would not have done the same, the point here is that Elisa had a choice and she exercised it. A choice that gave her the care she required to live the way she desired, for as long as she could.
Elisa’s story beautifully illustrates what palliative care is centred on providing – living well as long as possible, with as much time as patients have, regardless of their diagnosis or prognosis. This fundamental concept is at the heart of palliative care. Sadly, our healthcare system often prioritizes medical treatment over a patient’s quality of life. Patients and their families are left feeling helpless and overwhelmed, and their final days are filled with stress and anxiety. Palliative care, on the other hand, is a holistic approach that focuses on the physical, emotional, and spiritual needs of the patient and their family. By providing compassionate care and support, palliative care helps patients maintain their dignity and quality of life, even in the face of a serious illness.
Unfortunately, some still believe that palliative care is solely for end-of-life situations, which may prevent patients from receiving the necessary support to enhance their quality of life. For patients like Elisa, however, palliative care was a vital aspect of her holistic care plan. While hospice care is primarily intended for patients in the final stages of their illness, palliative care can be provided at any stage of a serious illness. Both approaches are complementary, and when used together, create a comprehensive approach to improve the well-being of patients and their families. For Elisa, palliative care was a key component of her care plan that allowed her to live comfortably and fully until the end of her life.
My team and I are working to alter the perception surrounding palliative care and emphasize its role as a crucial part of the care plan for pancreatic cancer patients and anyone facing a life limiting disease. As a society, we have a responsibility to prioritize the comfort and dignity of those facing life-limiting illnesses.
Palliative Care Week is an opportunity to recognize the significance of providing empathetic care to individuals and their families facing life-limiting illnesses. This year’s theme, “Palliative Care Everywhere,” as designated by the Canadian Hospice Palliative Care Association, highlights that compassionate care can be administered to individuals with a life-limiting illness wherever they may be. Regardless of a person’s condition, diagnosis, or prognosis, regardless of their geographic location, palliative care can be provided to help alleviate significant health-related suffering caused by life-limiting illnesses.
As we observe Palliative Care Week, it is my hope that we can find ways to work together to raise awareness and support for palliative care. By doing so, we can help ensure that pancreatic cancer patients have access to the care and support they need to live as fully as possible.
Thanks to the support and care Elisa received from her care team, she was able to live as comfortably as she could with her diagnosis. The several months leading up to the stage of her journey that required hospice care were guided by her palliative care team to ensure she could “carpe diem” her days as best as possible. She died peacefully with family surrounding her and, true to form, requested that her entire family wear white to her funeral to celebrate a life well lived.