HOSPICE: A DIFFERENT TYPE OF HOPE

C H A PTER I

Considering Hospice:

Sooner Rather than Later

Ellen Long Stilwell, RN CHPN

“Acceptance is challenging and also a new freedom” Hospice care is supportive care given with a team-oriented approach for those with an advanced life-limiting illness, as well as their family members. This team includes a nurse, physician, social worker, home health aide, spiritual care provider, physical therapist, volunteers and bereavement counselor. Hospice care focuses on quality of life at the end of life with comfort care addressing physical, emotional, spiritual and psychosocial needs.

Each of us is on a life journey that begins at birth and ends at death. Everyone, in a sense, is waiting for when his or her heart stops. This, typically, does not occur swiftly. Physical symptoms signal that the life journey is coming to a physical end. A life journey can be thought of as a stream with twists and turns. Possibly an unexpected waterfall. Sometimes it is calm, beautiful and unhurried; other times it is made tumultuous by forces either within or without our control - just as storms, rocks and fallen trees prevent the smooth flow of water in a stream. We can be prepared for both, just as we can be prepared for our physical end.

I am a hospice nurse. I choose to be a hospice nurse because I have witnessed both the beauty of the journey of life and the fear, anger, and courage of those nearing its end. With acceptance, we can endure the trials and tribulations of impending death. With acceptance, the beauty and consolation will flow. That is why I encourage hospice sooner rather than later. Most patients and their families do not consider hospice care until death is near – if they consider it at all. Understandable as it is, it is unfortunate and sometimes can be short-sighted.

Nurses are but one part of a hospice team. A hospice team member’s work is not easy, but those who provide hospice care have chosen to do so and are passionate about their work. Ask them why they have chosen hospice care as their profession! I’m sure you will find their answers interesting and compelling. Hospice care does not hasten death. Hospice care is comfort care. Patients and families are cared for. The hospice team is available to help. The latest cultural shift is dying at home. Working with a hospice team can help patients and their families confront and work through their fears of the unknown and face the patient’s death with courage and optimism. The hospice team will respond to calls for help and meet patients where they are spiritually, psychologically and physically. After a request for assistance, a hospice team member will meet with the patient and family to obtain basic information about the patient and explain the benefits that hospice can offer him or her. During follow-up visits, the team member will seek out additional information with continued assessments. Some patients will desire to die at home and have doctors well versed in end of life comfort who can prescribe the correct comfort medications for them. This does not preclude hospice care; the comfort care it provides is additive to that provided by other health care professionals.

I am inspired each time a patient and the patient’s family allow a hospice team to help them face the prospect of the patient’s death and, perhaps, open themselves up to a new perspective on it. Some will want to talk about it, and some won’t. Each situation is different; the way each person faces death is particular to him or her. Hospice respects each patient’s individuality. Its goal is to help each patient accept the totality of the end of this physical life in peace and with love and with the courage to face the fear of the unknown. The end of life is a sacred time. Those who are fortunate can accept it, manage how it unfolds, and face it calmly. How a person wants to prepare for death is of paramount importance; the decision is deeply personal. Addressing one’s own mortality and dealing with the grief following a terminal prognosis are stepping stones to peace and love. Powerlessness is a conscious observation which can also bring serenity. Powerlessness is a realization of being out of control. There is no power to control this natural process once in its end of the journey. Once conscious of this, once acceptance of this fact is realized a peace beyond understanding can occur.

During the final stage of life, personal introspection and reflection on one’s life are common as is the desire for fewer interactions with others. Leaving the outside world outside is more comfortable. Homebound then bedbound. It is common for a person facing the end of life to desire visits and communications only from those close to him. To assist with a peaceful environment narrowing the amount of visitors with the approval of the dying person is helpful. A life review with oneself, a trusted friend or a member of the hospice team is cathartic. If allowed, relationships can grow and slights and transgressions can be addressed and forgiven. Possibly creating boundaries finally with those that probably needed those boundaries drawn decades before can be stress reducing. Addressing slights with forgiveness will allow the period of bereavement following death to be less painful.