I believe most PAs enter medicine because of an interaction with at least one very special person in their lives. For me, the inspiration is my sister Boots (a nickname given at birth because she was so tiny the booties would not stay on her feet). Boots died in September 2010 while at home on hospice. She survived breast and endometrial cancer, only to succumb to pulmonary complications from muscular dystrophy. She was an avid sports fan, especially of the Chicago Cubs, and I wrote in her obituary, “Life never threw her a curve ball that she could not hit out of the park.”
After her stay in the ICU and a skilled nursing facility, I knew her death was approaching and wanted to honor her wish to be in her own home. I returned to Indiana to help Boots transition from the nursing home to her home on hospice. The hospice had not worked with a home ventilator patient previously, so I wanted to be there to smooth the way and to support her children and husband. She had a superb hospice team, including a physician medical director who visited her in the home; however, she needed my skills in palliative medicine as well to manage daily symptoms and issues. She had a wonderful 3 months with her family and died peacefully with her eldest daughter at her bedside.
This experience, along with other similar experiences with my own patients, have made me even more determined to advocate for PA involvement in hospice and palliative medicine. In 2008, I won the AAPA's PAragon Award for outstanding PA of the year, and I donated my award money for the construction of the Pine Pointe Hospice House, part of the Hospice of Central Georgia (http://hospiceofcentralgeorgia.org). Pine Pointe opened in September, but because of reimbursement policies that exclude hospice payment for services by PAs, I cannot practice in the facility. Nor can I provide the required face-to-face encounters to certify patients to receive continuing hospice care.
Hospice developed as a philosophy of demedicalization of care, allowing people to die at home rather than in an impersonal institution. Hospice is meant to make the last stage of earthly life the best it can be and to provide for control of symptoms as well as for the spiritual and psychological growth of dying persons and their families. The emphasis is on living life to the fullest, whatever time may remain. Many patients do very well with hospice, and improvement is not unusual, especially in the early stages. I have never had a family who regretted choosing hospice, but many are dismayed that they waited too long to receive the full benefits of the service. Four of my family members have died while on hospice, and all of us have been grateful for the care of the hospice team. Patients may be in a nursing center, at home, in an assisted living facility, or in an inpatient hospice. The latter is used for respite care for caregivers, for patients whose symptoms cannot be managed in a less intense setting, and for those who are very near the end and have no able caregiver at home.
Why should PAs work in hospice? Many PAs have close relationships with their patients, having followed them through their lives. At the end of life, people have three major fears: abandonment by others, uncontrolled unbearable symptoms, and being a “burden.” A trusted health care provider can allay much anxiety in all of these areas. Simply being there provides reassurance that the dying person is valued and is not a burden. The willingness to take the last journey with a patient is incredibly appreciated by the dying and their families.
We can allay unbearable symptoms, allowing the dying to meet their needs for spiritual growth and fulfillment. With our emphasis on interview and physical examination skills, depth of training in the process and course of most diseases, and pharmacologic expertise so critical for relieving symptoms, PAs are uniquely qualified to care for these most vulnerable patients. We can assist in decision making, especially at the critical transition from an emphasis on curative care to aggressive palliation.
It is an injustice to those for whom we care that a hospice cannot be reimbursed for the services of a PA. One of the highest values of the hospice philosophy is that of a team working together for a family in crisis. How ironic that our profession, so devoted to the team approach to care, is denied the ability to be part of the hospice team.
Boots' journey was like the journey we all make—full of joy and sometimes sorrow—but I know her life was meaningful for everyone she met. I will always miss her, and I am grateful for the lessons she taught me about perseverance and the dignity of every human being. I truly wish I could be there for all of the dying and their families. They have so much to teach us about life and what really matters. If we as a profession can change prohibitive policies, you, my colleagues, will be in the front line with hospice, doing what we do best—providing the care our patients need. And Boots, who never gave up on the Cubs, is surely cheering us on.