A close friend of mine called me for advice. A local business owner had confided that her husband was recently diagnosed with inoperable liver cancer. Although her husband had been accepted into a clinical trial study at a major teaching cancer center, a grim second opinion from another center was too much to endure. The woman whose husband was afflicted with cancer divulged that she did not know what to do. Other than starting the clinical trial, no other alternative had been provided to them. They were utterly overwhelmed with the dire diagnosis and had never spoken about what they would if a healthcare crisis would strike. Neither institution discussed palliative care as an option. The wife was overwhelmed, needed information and guidance.
My friend wanted to help. She called me to inquire as to how to direct the family. She was well aware of my interest and passion for palliative care education and knew I would be able to provide some information. I suggested 2 websites that are necessary for anyone who is in this type of desperate situation and need guidance, such as this family was in.
Get Palliative Care https://getpalliativecare.org/
Five Wishes https://agingwithdignity.org/
Ideally, this type of conversation should be conducted with a family before a serious illness is diagnosed or in its early stages. My friend, instructed the woman that she needed to demand palliative care. There are resources available to patients, but palliative care is currently underutilized, not widely discussed and misunderstood.
We were in the same situation 20 years ago when our son was diagnosed with cancer, but back then, the concept of palliative care was in its infancy. We had no one to help guide us through our 5-year ordeal with our son. Being an RN, I sought out the information and had many colleagues who directed me, but no one in any of the institutions we used was comfortable with discussing what was important to the patient and family, quality of life and supportive care. Now, advanced healthcare communication training classes are being introduced to those who are interested in pursuing more education. As a healthcare provider, I totally understand how difficult these encounters are, but they are necessary and there are many professionals who have the interest to learn.
It has been a slow process, but palliative care has now become recognized and understood for the multitude of benefits it provides. It includes medical treatment, pain and symptom relief, psychological support, improved quality of life and spiritual care for the patient and their family. Research has proven that patients who are introduced to palliative care early in their serious illness, live longer and fuller lives. There are crucial elements of care that need to be discussed before a crisis strikes. Receiving bad news from your physician is overwhelming and absorbing this type of information is very difficult emotionally. It takes time to process all the information and the patient and their family need to be educated in a timely, methodical, unrushed fashion. Unfortunately, the majority of health care providers have not been educated in palliative care nor have the time to implement it. The National Academy of Medicine (formerly known as the Institute of Medicine) acknowledged the need to fill the gap for those suffering from a serious illness. Medicare has just recently started providing reimbursement to institutions for this type of discussion, but it will take several years to educate a new generation of health care providers and health institutions to fully apply this knowledge. With a growing aging population, the need is too great to be ignored.
The Kanarek Family Foundation is committed to educating nurses and other health care providers on how palliative care can improve quality of life and how to best help their patient’s at their most vulnerable time of life. The Kanarek Center for Palliative Care at the Egan School of Nursing, at Fairfield University opens its doors next week and will begin educating undergraduate and graduate nursing students on the crucial role palliative care plays in helping families. Through lectures, simulation, clinical experience and in-depth discussions, students will learn how to navigate through these difficult conversations and how to best address the needs of their patients. In time, palliative care will become an integral part of healthcare and all patients will have the availability of such a vital level of care when a serious illness strikes.