All of us, as human beings, have to face death at some point, be it our own or that of someone we love. Death can be painful and difficult both physically and emotionally. I believe that good palliative care is essential to help patients and families cope with the associated stresses.
My name is Frances Tracey, and I am Eastern Health’s palliative care nurse navigator. Although I have worked in various areas within Eastern Health and I have cared for many patients for over 25 years, I found that I gained great satisfaction in being able to bring comfort to them at the most difficult time in their lives.
A number of years ago, before I worked in palliative care, I cared for a young man who was on a hospital unit for several months. It was a small unit so I got to know his family quite well. It became obvious that this man would not be able to go home and the decision was made to stop attempts at a cure. His young wife was understandably devastated. I was with her when he passed away, and as she was leaving the unit, she told me that she could never have gotten through the worst time in her life if not for our staff.
I was so moved to think that I could help people with more than dressings, medications and procedures. It was then that I knew I would love to work in palliative care.
Navigating palliative care
Palliative care is a type of health care for patients and families facing a life-threatening illness. It focuses on providing relief from the symptoms of such illnesses.
Palliative Care Services at Eastern Health are comprised of an interdisciplinary team of health-care providers that offer services across the region at specific sites, as well as in the community.
I started in my job as a nurse navigator for palliative care three years ago. My primary role is care coordination and it is guided by two objectives: first, to make the complicated more understandable and second, the overwhelming more manageable.
As the nurse navigator, I am the first point of contact for patients seeking palliative care services. It is my job to assess and triage referrals, and to be available to patients, families and other health professionals to answer questions and provide them with direction. Patients have expressed increased satisfaction when they have one person they know they can contact for information. This approach puts our patients and families at the centre of our palliative care program.
Contrary to common belief, palliative care is not only about dying; it is also about living – helping people live the best they can with the diagnosis they have been given, and helping their loved ones live with it too. By shifting focus to symptom-management, rather than end-of-life care, palliative care aims to improve the quality of life of those who live with terminal diseases.
For instance, a very big part of my job as nurse navigator is to help patients stay at home as long as they choose to do so. Using palliative care services does not mean that the patient has to be admitted to the palliative care unit.
In fact, research shows that early referrals to palliative care can sometimes enable patients to stay at home longer, require fewer visits to the Emergency Department and live longer.
I had a patient once who was being seen for symptom management. She refused to come to the palliative care unit as her father had passed away at this unit several years back. She told me that she was not ready to die.
At one point, her symptoms had become more than she could handle at home. Through our conversations, she decided that she needed to be admitted. It was a very difficult decision for her. I explained that she could come in, the doctors could work with her to get her symptoms under control and possibly, she could be cleared to go back home.
She reluctantly agreed. She spent about two weeks on the unit and on the day she was discharged home she looked at me and through tears said, “I should have come here months ago. I feel better than I have felt in months.” Boy, did that ever feel good. It cemented my thoughts on the benefits of palliative care.
Who should seek palliative care services?
If you have been diagnosed with a life-threatening illness, you should seek palliative care services.
Some people think that palliative care is only for those diagnosed with cancer. This is not the case. People living with heart disease, dialysis or renal problems, amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig’s disease), multiple sclerosis (MS), respiratory illnesses, among others, would greatly benefit from the services of palliative care.
At Palliative Care Services, we work hard to help improve the quality of life of people living with such life-limiting illness. I am grateful to be part of this team and to be able to help patients and families during their most difficult times. ■
Learn more about Eastern Heath’s palliative care services on our website.
This story was written by Frances Tracey, palliative care nurse navigator with Eastern Health.