Passion for Palliation & End of Life Care

Article Feature by NEPA 12 VITAL SIGNS

April 30th marked the 12th anniversary of my father’s death due to metastatic pancreatic cancer at only 68 years old. My father, widely known as “The Captain” as he earned this rank in the Scranton Fire Dept., was my biggest fan and quite possibly, my toughest critic. Interestingly, my father was shocked when I chose nursing as my major at the University of Scranton. But looking back, it was his praise and, at times, criticisms that have driven my passion and made me the successful professional that I am today.

To be honest, I never truly enjoyed nursing. In fact, I believe if I was brave enough, I would have changed my major after clinical rotations began. After earning several nursing opportunities earlier in my career, I actually left the nursing profession for a sales and marketing opportunity. Clearly I had not yet found the right match in my nursing career. Seventeen months after my dad was diagnosed, I was introduced to Hospice. In response to the tremendous care my dad received at the end of his life, I promised that if I returned to the nursing field, I would only return to Hospice and give back some of what my family received.

12 years later, I am the Director of Allied Services Hospice. It is definitely my passion not only to provide outstanding care to patients and their families at the end of their life, but also to educate the community regarding the wonderful benefit of Hospice and all that it provides. Beyond that, I am also committed to increasing care to those with advancing illnesses and am working diligently with Travis Davis, my co-worker and Director of Allied Services Palliative Program, to making a difference in our community by embarking on a community-based Palliative Care program at Allied Services. The Palliative Care Program will be an extra layer of medical support, appropriate at any age and at any stage in a serious illness, provided simultaneously while seeking curative treatment.

My father chose to end his treatment 3 months prior to his death. We received Hospice care after my father began to be terminally agitated 1 week prior to his death. The care he was entitled to, and yet never received, is the catalyst which drives my passion for Hospice every day. I do not want another family to experience the anxiety, fear and frustration my family experienced during the last weeks and months of his life.

90% of people say that talking with their loved ones about end of life care is important, yet only 27% have actually done so.

Conversely, I am a true proponent for conversations, which is the basis for initiating a Palliative program. My father knew he wanted to live out the remainder of his life surrounded by family and friends. He no longer wanted to spend hours in doctors’ offices. He should have been referred to Hospice the day he decided to forego treatment. However, no one spoke to us regarding end-of-life decisions, advancing illness, where HE saw his care, what HIS wishes were and WHO should make sure his wishes were followed if he could not state them himself. Because of that, the burden of decision-making fell on me, the only member of the family with a medical background. The uncertainty of the decisions has plagued me for too long.

Placing my own personal experiences aside, why am I a proponent of the “Conversation Project”? The numbers below demonstrate the true need:

• 82% of people say it’s important to put their wishes in writing, yet only 23% have actually done it.
• 90% of people say that talking with their loved ones about end of care is important, yet only 27% have actually done so.
• 60% of people say that making sure their family is NOT burdened by tough decisions is “extremely important,” however, 56% have not communicated their end-of-life wishes.
• 80% of people say that if seriously ill, they would want to talk to their doctor about end of life care, but only 7% report having an end-of-life conversation with their doctor.

I miss my dad every day, and feel my children were cheated by his early departure from this good Earth. But out of this tragedy comes the hope I can help make a change for others’ experiences. I am passionate about people understanding what Hospice is, when it is appropriate to be started, and for people to understand that you should not be afraid of Hospice. For those who have advancing illnesses, specifically individuals who are still seeking a cure, there will be help for those patients too, and it is called Allied Services Palliative Care. Certified Palliative care providers will open discussions with patients, families, and with many practitioners to ensure quality of life as the patient sees it. We will promote the discussions that are so sorely lacking and are begging to be had and services that should be understood. Discussions will focus on what matters to them, not what is the matter with them.

I know my family thanked the nurses and staff of the VNA Hospice inpatient unit 12 years ago for the tremendous care rendered to my father. And now I’d like to thank those same people for allowing me to give back to my community, increase the care for those with advancing illnesses and end-stage illnesses, but most importantly, every day I go to work knowing that I can make a difference. The fact is, I nearly departed my career in nursing, but now I have found a passion, with purpose and true meaning that drives me to make sure the best care is provided, that doctors, nurses, patients and families understand that Hospice is not about death at all. Hospice is about living your life comfortably, however long that may be. And for those still seeking curative treatment, but need assistance understanding their advancing illness and decisions that need to be discussed, there now is additional care available.