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Dying With Love through Hospice

There are many things in our society we do not talk about. One of them is death. Each life is like a candle. There is a time to burn brightly and fully until the last moment. We need to learn the place for love, faith, hope and joy in the dying process, until our life candle is no more.

There is a land of the living and a land of the dead and the bridge is love, the only survival, the only memory. Thorton Wilder

Generally considered a program or philosophy or program of care than a place, Hospice is a unique blend of services that address the physical, emotional, and spiritual needs of the terminally ill person and his or her family. Hospice care is provided by an interdisciplinary team of professionals and volunteers, guided by the goal of an individual care plan. Hospice care emphasizes palliative medicine and supportive services rather than cure oriented therapies and interventions. In Hospice care, the management of pain and symptoms is an appropriate clinical goal and one of its cornerstones. Services are usually provided in a patient s home and in such alternative residences as nursing homes, hospice residential facilities, and other congregate living facilities.

The National Hospice Organization defines palliative as treatment that enhances comfort and improves the quality of the patient s life. No specific therapy is excluded from consideration. The test of palliative treatment in Hospice care lies in the agreement by the patient, the physician, and the Hospice team that the expected outcome is relief from distressing symptoms, easing of pain, and enhancement of quality of life. The decision to intervene with an active palliative treatment is based on the treatments ability to meet the stated goals rather than it s effect on the underlying disease. Each patients needs must continue to be assessed and all treatment options explored and evaluated in the context of the patients values and symptoms. 1

The Latin word hospis, meaning host (and guest) forms the root for the words hospitality, hospital, hotel, and hospice. It is possible to trace the concept of Hospice care back to fourth century Rome, when it was reported that a woman named Fabiola used her own wealth and personal effort to care for the sick and dying. Later, the Catholic Church continued the concept through the Middle Ages by offering a place of refuge to the poor and sick, as well as to travelers returning from the battles of the Crusades. These hospices were established to care for ill or weary travelers, and most certainly cared for the dying. 2

The renaissance of Hospice is due largely to the efforts of the English advocate Dr. Cicely Saunders. Her life story itself illustrates how caring for the dying can completely transform ones life and give it new meaning and direction. She began her work with the dying in the 1940 s as a registered nurse and social worker. Through her experiences she strived for a dream first discussed with one of her patients: they both envisioned a restful place where the dying could spend their final days or weeks. Over a period of 19 years Saunders managed to earn a medical degree, undertook extensive research in pain management raised money and eventually built a genuine Hospice in London, England. St. Christopher s Hospice opened in 1967, and continues to this day to provide

care. 3

Another woman who had a great impact on the way we view Hospice in the United States is the psychiatrist Elisabeth-Kubler-Ross. Her book on Death and Dying , published in 1969, opened the eyes of the world to the emotional, psychological, and spiritual needs of the dying. From her experiences with dying patients, she has built a legacy of teaching and writings about the stages of death and dying and believing in life after death.

Dr. Kubler-Ross has stated, My goal has been, and still is, to educate health care professionals as well as clergy to become more familiar with the needs, concerns, fears, and anxiety s of the individual and their families who face the end of their lives. Both Dr. Saunders and Dr. Kubler Ross have responded with extra-ordinary care and effort of devotion and commitment to create ways of attending to the suffering of those who are dying. The focus then and now of Hospice is to create a loving environment to cherish, refresh, and honor the dying ones.

The Federal Governments Medicare Hospice Benefit Program of 1984 is a primary example of how we have drawn on Dr. Saunders work to try to improve our own National Health Care system. The Federally funded program, providing a standard of Hospice care for anyone eligible for Social Security Medicare, has influenced and accelerated the development of Hospice in our country during the last decade. It has opened many eyes to the importance of Hospice care; the administration of the benefit has caused some private insurance providers to follow in developing comparable programs for those under 65 years of age. As a result, Hospice is widely available today. Significantly, the benefit provides assistance to those wishing to die at home.

Entrance into the Hospice program requires a physician referral, which can come about in several ways. The referral may be initiated by a physician who finds that at some point in the patients treatment all curative measures have been exhausted and it is now time to focus on comfort and support. Medicare requires that the physician state a life expectancy of less than 6 months for the patient. Although Hospice is available for any chronic end stage illness, we commonly associate it with the elderly and cancer. The majority of their patients are over 65 years old. Most often, the physician will discuss the referral with the patient and those involved in his or her care.

Families or friends may be the ones to initially talk to the dying person about Hospice care options. And sometimes, it is the patient who decides to end curative treatment and requests a referral from the physician. Still others-including family members and physicians in addition to the dying person-may not want to give up the option of curative treatment at any time. They may choose to fight to stay alive to the very end. Hospice is not for everyone. Each person s time and place of dying is unique to that individual.

Today is a good day to die for all the things of my life are here.

Chief Crazy Horse

Spiritual concerns raise fundamental questions about life. Why are we here? What is a good life? What happens after death? These profound questions become especially important as life nears its end. As a caregiver, you can support the patient in thinking about his or her own answers to these questions.

Spiritual questions are not answered easily, of course. For those people whose faith gives answers and comfort, your support of that faith will be both helpful and appreciated. For those who are troubled by uncertainty, you can help by sharing your own questions and uncertainties – showing that their concerns are normal and reasonable. If you can admit to the possibility, it may be helpful to say that not all spiritual questions can be answered. It also may useful to ask about beliefs that were helpful to the patient before this illness and if they can be helpful again now.

Professionals such as clergy or counselors who have experience helping people with spiritual problems near the end of life can be very comforting to the person you are caring for, provided that he or she wants their help. Spiritual questions are very personal; therefore, the person with these concerns is the one who knows best who can help. Bringing in someone who is not wanted can backfire and cause rather than resolve problems. Let the person you are caring for know that you will be happy to arrange visits by clergy or others who could help, but that this decision is entirely up to him or her. Do not expect all clergy to be equally skilled in working with people during the last stage of life, however. If one is not helpful, keep looking until you find one who is. Hospice or palliative care staff can help you locate someone with the necessary skills, and hospital chaplains usually are experienced in working with people near the end of their lives and may be able to help.

If the patient is seriously depressed because of spiritual concerns, seek help from a mental health professional or clergy with training in mental health care. Also, be available to listen. Speaking with another person who understands helps to put one’s thoughts in perspective and also to see that others appreciate and understand them. The person with advanced cancer may want to make sense of his or her life experiences, to reminisce, talk about the past, and look for meaning in what has happened. As a caregiver, listening is the most important thing you can do to help. Let the person you are caring for know about your willingness and availability for these discussions when and if he or she wants them. If you find it very difficult to listen to the patient’s concerns, then find someone, such as a member of the clergy, family member, or friend, who can.

For people whose religion is very important and gives meaning to both their lives and their dying, you can help by asking questions that allow them to tell you, if they wish, what about their faith has helped them through life and is helping them now. You must be careful to accept and respect views that are different from your own, however. Let them tell you if there are ways you can encourage and support them in their faith. Would they like to listen to a tape of hymns or other religious music? Is there a religious symbol that would bring them comfort? Would they like to share with clergy from their faith one of their traditions, such as a bedside prayer service?

Share your views and feelings when you are asked or think that he or she would like to ask. Hearing another person’s thoughts and feelings can be helpful to someone who is troubled by spiritual problems, but always let the person you are caring for be your guide – never impose. Sometimes, reading together from spiritual writings can be comforting and may help to resolve unanswered or unresolved questions. These readings also can provide an opportunity to share how you feel about these issues as well.

You may be worried yourself about spiritual questions. Watching and helping someone who is dying sometimes can bring up very difficult issues. These may be about the unfairness of the situation, fear about what will happen to the person you are caring for after his or her death, fears about your own death, and general confusion and anxiety about what life is about. Talking with clergy, counselors, hospice staff, or health professionals who work with the family and friends of dying people can be very helpful. They have experience helping those like you. They will listen and help you to think through these issues. You may find it easier to talk to some people more than others, and you also may find that some are more helpful than others. If the first people you talk to cannot help you, keep looking until you find the person who can.

When we can no longer control the circumstances of our lives, we can still choose our attitude about them. We can choose our attitude about dying. We can choose to see it as a tragedy, teacher, adventure, or simply as an experience to be lived. Our attitude will determine the nature of our experience.

An open heart is the most important thing we can share with anyone dying soon or dying later. An open heart is love without conditions and judgements. Not I love you if Just I love you. No one is right or wrong. Dying is not good or bad. Everything is just fine. From an open heart we can sense all the needs of a person preparing for his or her great change. Listen, see and touch from our heart. We need to be open about what dying can teach us about life.

We best serve all involved by realizing that dying is okay. If we resist a persons dying, we increase their resistance. If we pretend circumstances are different than what they are the dying have to play a painful charade with us. Pretending, not communicating isolates people from one another and makes dying very lonely for everyone involved. Pretending can leave you with the I wish I hads I wish I d said Instead we can do what is in our hearts. We can be open to this natural life process called dying.

The ultimate gift of love is letting someone die in his or her own way. The goal of Hospice is to help make a supportive place in which this process can happen. Let the dying person be where he or she is and don t try to push them where we would like them to be. They are not here to die our way, but in their own way. Dr. Kubler Ross said, Dying with dignity is not necessarily dying with peace and acceptance, but dying in character.

Dying like living has its share of sadness and joy. The sadness of letting go of the person we love is tempered if we remember to hold everyone we love lightly, knowing they are just on loan. When someone we love is dying, we tend to focus on sadness, not on joy. But it is a choice. We can allow joy into this often most painful experience of our lives; the quiet joy of sharing love and caring, of seeing a loved one content, of touching into timelessness. If we live each moment of each day fully, we transcend time. Each moment becomes an eternity and we have all the time in the universe to share with this dying person we love. It doesn’t matter how long we live, only how we live the time we have. It is possible to create of this experience a beautiful time in your life.

The increased love and compassion we can learn while caring for someone who dies at home will help us through our initial loneliness. If the death has not been sudden, there has been time between smoothing the sheets, emptying bedpans, holding hands and talking of what may come, for grieving and resolving any unclarity with the dying person. There has been time to begin a gradual adjustment to earthly life without this person.

Because dying is living intensified, the qualities most needed to support someone dying are the same ones needed for living fully: love, compassion, courage, serenity, patience, humor, humility and right use of will-allowing others to live or die as they choose as long as they take responsibility for their choices.

By taking responsibility for dying, we reclaim responsibility for living and regain personal power we d given away. One way to take responsibility is to stop playing victim to our culture s pressure to go away quietly and die in the sterility of a nursing home or hospital. Who wants to be seen a s a forthcoming vacancy! We can die right here at home amidst the people and things we love, our family, the dog, the garden, and our favorite chair As we are reminded of death in this fall season of growing darkness, let there be an opportunity to look at death: past the tragedy, the awesome darkness of it, to see the wonder. Truly it is a final lesson in trust, surrender, and deep peace. In the end, there is nothing to fear.

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