Helping Others Sustain Peace Improve Comfort Experience = H.O.S.P.I.C.E

Hos-pice (hos’pis) , n. 1. A house of shelter or rest for pilgrims, strangers, etc. esp. one kept by a religious order. 2. A healthcare facility, or a system of professional home visits and supervision, for supportive care of the terminally ill. (Webster’s Universal College Dictionary 1997.)

Over the past few months I have been contacted with questions from people who have loved ones in an advanced declining state of health. The content of the discussions was mostly as a listening role for me and an offer of hope. The experiences over my lifetime in addition to 21 years in healthcare with more than ten years in Hospice have given me a breadth of understanding of the wave of fear, doubt, and panic that occur when we are faced with death. No matter the religion, culture, or level of education, these feelings have one common denominator in my mind: Hope.

As my clinical path wound through the multitude of different environments, I became more and more confident that Hope is never lost on any outcome. It simply changes focus. Hope shifted from total recovery, and cure, to hope for a remission or treatment’s extension of time to reach a goal, such as the birth of a child, graduation, birthday celebration, travel or any number of “bucket list” opportunities held in high favor. Or hope for palliation from symptoms during chemotherapy, radiation, post-operative healing, or pain.

Along this journey there are different options for care. Palliative medicine is one of my most cherished choices. Anyone suffering from acute or chronic pain has the option for palliative care. Pain therapy is very similar and works in cooperation with palliative medicine in dealing with precision spinal infusions, joint injections, nerve block therapy and multiple other avenues to seek relief. In the cases of more severe diagnoses as cancer, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease), Alzheimer’s, stroke, heart disease and many others, often the “hope” shifts from cure (or maintaining function) to care. This is when Hospice becomes optimum as a continuation of support to maintain the desired relief from symptoms. This support can take place in a patient’s home, a specialized Hospice Unit in a hospital, or nursing home. Palliative medicine can occur simultaneously with hospice care.

Hospice care is provided by a variety of agencies and private groups. Some hospitals have hospice in-patient units; others are private hospice agencies not affiliated with a hospital but may still have their own hospital-based hospice unit.  Still other Hospices have a “hospice house” which is more of a home-like setting staffed by the same supportive system available in the homes or nursing facilities. Hospice staffs consist of a medical director who is usually a doctor, nurses (RN, LPN), social workers, volunteers, personal care aides and chaplain. Private duty personnel are often used through funding assistance from Area Agency on Aging or are privately paid people who have had caregiving experience. Together with a family centered approach, the Hospice experience guides the journey and directs the care.

In the private home setting, the responsibility of the family is often misunderstood as “Hospice will take care of everything”. There are usually only limited 24/7 Crisis Care options that are available and this is an important topic to be discussed during the initial interview with Hospice staff. Safety and comfort become the hope and priority. Occasionally, after hospice involvement, symptoms are relieved and patients may actually live longer with more quality time than originally expected. Hospice regulations maintain that as long as there are continued changes or declined function, re-certification is permissible and on-going evaluations occur within strict guidelines by the Hospice staff. There are even those who stabilize or improve while on Hospice who could return to continued palliative care and visits with their regular doctor.  If their health declines, they can be readmitted to Hospice status. Not everyone dies immediately who elects hospice care. Often it is the delay in the referral or election of Hospice that dictate the statistically short length of Hospice involvement. It is this fact, along with the intention of Quality of Life, that will allow my continued involvement in discussions with anyone interested in Caring Choices conversations.

(c) 2013 Caring Choices