In March of 2018 my son died after years of hospitalizations and procedures to treat his neurodegenerative disease. Often it still feels unreal that he can be gone. I am a nurse and for 20 years, I was Dan’s nurse. Sadly, the last months of his life were very difficult and I wish that could have been different.
Serious illness impacts more than 90,000,000 people in the United States. In almost every case they could benefit from palliative care. Unfortunately, many do not receive it until late in the course of their disease. Easing suffering is at the heart of palliative care. Palliative care teams are made up of caregivers from medicine, nursing, social work, and chaplains. Some of this is due to the idea that it is “end of life care.” Hospice care, by definition, is care provided to an individual in the final 6-12 months of their life. Palliative care can be used along with ongoing curative treatments for an illness. People who can benefit from palliative care include those with cancer, congestive heart failure, respiratory diseases, Alzheimer’s and neurodegenerative diseases including Parkinson’s Disease, and ALS. You probably know someone with a serious illness who could benefit from palliative care.
Access to palliative care, particularly in rural areas, is limited. Only 17% of rural hospitals with fifty or more beds report having palliative care programs. In an effort to increase access to palliative care and provide education for medical professionals, a bill was introduced in the House of Representatives called the Palliative Care and Hospice Education and Training Act (PCHETA), H.R. 647 on January 17, 2019. It passed unanimously on October 29, 2019, and now goes on to the Senate for consideration. The bill had nearly 300 co-sponsors and strong bi-partisan support. It aims to improve care for patients suffering from serious illnesses by creating programs that would train palliative care providers, educate patients about palliative care benefits and expand research in the field. It has received endorsements from 54 national organizations including The American Heart Association, Susan G. Komen Foundation and the Visiting Nurse Association of America. The bill will provide funding in three key areas; workforce training, education and awareness, and enhanced research. The Center to Advance Palliative Care found in a 2011 poll that virtually all respondents agreed it is important that patients with serious illness and their families be educated about palliative care. This bill would help to accomplish that.
In the last nine months of my son’s life we spent 286 days in the hospital. Even as a medical professional it was difficult to know when to ask for palliative care. By the time Dan chose it, his health had declined to the point that he needed hospice care. His goal was always to come home, no matter what was going on with managing his disease. Each successive hospitalization tested his strength physically, but even more emotionally. His homesickness caused him much more suffering than his physical illness.
I now know that all of his symptoms could have been managed at home, and we could have had valuable, precious time together in the place he valued most. H.R. 647 would have helped prevent much of my son’s pain. We need more palliative care providers, better access to palliative care and more education about what palliative care really means so that the type of suffering my son and our family went through can be prevented for other families coping with the immense challenge of caring for a loved one with a serious illness.