Does the responsibility of the healthcare community stop at curative treatment when it is introduced to someone with a serious, life-threatening illness? You probably answered absolutely not—if patients undergo curative treatment there should be more to their care. But the fact is, the scope for many providers is just that—to cure.
Nationally we have an aging population, who are living longer with serious and/or several chronic illnesses that affect their quality of life. Millions of Americans live with this and the numbers are expected to grow substantially over the next 25 years, according to the Dartmouth Institute for Health Policy and Clinical Practice.
Our national healthcare system has been focused on keeping patients alive at all costs, and with the technology available, it can be for a long period of time without considering what the patient and family’s needs are, or their wishes for care and quality of life. Their physicians oversee their pain relief and symptom management but who oversees their spiritual, psychological and emotional well-being, not only for the patient but for their families?
That is what palliative care is all about. It includes curative treatment while at the same time supporting the patient and family through the course of a serious illness. Doctors, nurses, social workers, psychologists, and chaplains work together as a team to help assess the needs and wishes of their patients.
The earlier palliative care is introduced, when someone receives a serious, life-limiting diagnosis, research has validated the sooner quality of life is improved. There is less incidence of depression, the fear of the unknown is minimized and many times, the patient lives longer because they feel supported and know their needs will be met.
Seventeen years ago we lost our son, David, to cancer. He was treated in some of the best children’s cancer centers in the country. But at the time, the concept of palliative care was not introduced to us. David required psychological, emotional support and there was no one there to talk to him other than a psychiatrist who was unable, for whatever reason, to address and discuss, the concerns he had. It wasn’t until after several years following his death that I met a nurse who counseled teenagers who were dying from cancer. She had the incredible ability to discuss the hardest of all topics, one’s mortality and was able to elicit from her patients and families what was important to them at this stage of their life. That was my ‘aha’ moment. I realized that it was not a psychiatrist who needed to have these discussions with the patient, but a nurse. A nurse, who is at the bedside and who is in constant contact with the patient, could have sat with David and listened to what was important to him. At that time, nurses were not trained or expected to have these type of discussions. I started on a journey 15 years ago to tackle the issue of how to improve patient care through educating nurses and other healthcare providers on the critical role palliative care play for patients and their loved ones.
At the Kanarek Center for Palliative Care, we are educating nursing students to the many issues of how to address the multitude of needs of their seriously ill patients. Beyond pain relief and symptom management, the students will learn how to assess the psychological, emotional, spiritual, cultural issues and needs that their patients may have. Communicating effectively and sensitively are key factors that need to be taught to every healthcare provider. The art of listening is crucial in order to deliver a full assessment of what is important to the patient.
Unfortunately, there are barriers to getting palliative care integrated into healthcare. One of them includes a lack of palliative specialists to deal with the number of patients who require this type of care. Another is the public’s confusion over the distinction between palliative care, which includes curative care, and hospice, which is non-curative. There is much work that needs to be done but Fairfield University’s Egan School of Nursing and the Kanarek Center for Palliative Care will be a leader in educating nurses and other healthcare providers on what needs to be done for their patients at their most vulnerable time of life. Our nurses will be educated on how to assist in evaluating the patient’s quality of life and help in determining what is truly important to the patient and their family. We are already seeing positive changes. In time, we hope that patients who seek or require palliative care will have the resources and health professionals readily available to them. The goal of palliative care is improving quality of life, quality of care and patients having choices, and a say, over how they want to LIVE.