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Insight into the purpose and practice of hospice care.
Rebecca McAleer, MSW, a social worker with TrinityCare Hospice, Torrance, Calif., –
At the end of life
She is sitting next to his bed, watching and waiting. The man who has been next to her side for 65 years is too sick to open his eyes. The doctors say he is dying. They are asking her to make decisions she just can’t bring herself to make. She feels helpless, and even though her children are close by, she feels completely alone. In another part of town, a man sits in his apartment. The doctor has told him he is dying. He is the last living person in his whole family.
He has friends who care about him, but who can he ask for help? Who will take care of him? Another scenario is unfolding at the hospital downtown. A large family is gathered around their mother’s bed. She is gravely ill and will only live a few days. Her last wish is that her children will solve their differences. They are all together now, but they do not speak to each other.
What do these families and so many others have in common? Each will have to come to terms with the loss of a loved one; a loss that is surrounded by decisions to be made and issues to be faced. They will struggle through conflicting feelings about the issues of life and death. Many have never discussed their wishes with each other. A million questions to ask, but their shock leaves them speechless. They may have a sense of helplessness because they have no control over their situation. Most struggle with issues of right and wrong as they weigh their choices. Many have strong religious beliefs and a peace that comes with those beliefs. Others have not reached out to God and this becomes a time to examine their beliefs about what happens beyond this life.
What is hospice?
Each of these patients and families have been referred to hospice by their physician. What is hospice? Its history of hospice goes back to the middle ages in Europe, when religious orders established places of rest and support for pilgrims. Through the centuries they continued to offer care for the sick in local or regionally based institutions. Most people died at home. Throughout the 19th century there was an increase in medical knowledge and hospitals were developed. By the mid to late 1900s, 80 percent of people died in hospitals or nursing homes. Death was no longer in the home; people went away to die and people no longer talked about the issues of death openly.
In 1969 Elizabeth Kubler-Ross published On Death and Dying and reopened the dialogue about death in our society. She said, “We live in a very particular death-denying society. We isolate both the dying and the old,, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients spiritual, emotional, and financial help in order to facilitate the final care at home.”
A philosophy of caring
In the 1970s and ’80s hospice institutions were organized in the U.S. People began to become aware and were more open in discussing issues of death, expressing their wishes for their final care. They began taking a more proactive role in planning for their own death, so that they will have a say in the decisions made for them. They are preparing living wills and advanced directives, leaving legal documents with instructions stating their wishes.
The philosophy of hospice can be called a philosophy of caring. Hospice recognizes that death is a part of life and is available to openly discuss issues of death with the patient and family. Hospice affirms life. Rather than focusing on death, the focus is on living life to its fullest every day one has left. Hospice treats the patient and family as a unit because the impending death affects everyone connected with the patient. Hospice is coordinated by an interdisciplinary team of physicians, nurses, social workers and chaplains. Services are available at all times, with on-call staff of all disciplines available day and night. There is follow up for the survivors and a team of volunteers whose help sustains quality of life.
Difficult questions
To return to the scenarios above, these patients have been referred to hospice by their physician. Some may be comfortable with the idea because they have had contact with hospice before through a friend or loved one. However, some may have misconceptions about hospice. They are afraid because they don’t understand the support and help hospice can bring to them. They have heard that hospice is a place where people go away to die. They don’t understand that hospice can serve them wherever the patient is: home, nursing home or hospital. Their doctors know they will need medical care as well as emotional and spiritual support. They will need to learn about pain control and the process the body goes through as it prepares to die. Hospice nurses are experts in managing pain and work closely with the patient’s physician, the family and the patient. Many of the families are already hurting because they have longstanding family conflict. Hospice social workers and chaplains make themselves available to assist in issues of forgiveness and reconciliation.
Many have made no plans for the future and now, while they only want to attend to their loved one, they are forced into thinking about final arrangements or finances or the issues that separate them. Hospice workers are available to guide and support families as they work to put these issues in order. When surrounded with the emotional and medical support they need, many become open to interventions that will bring them to a place where they can work together for the common goal of caring for the patient. The hospice team can assist them as they prepare to face the issues of loss and grief.
Issues surrounding death and loss
Our society has come a long way, but again, we have difficulty discussing the issues surrounding death and loss. Often, we don’t prepare for the time when we must make what seem to be life and death decisions for someone else or have them made for us. The issues surrounding death can be medical, psychosocial or spiritual. All are important and care needs to be given to assist the patient in preparing for death and the family in letting go. The patient and family members find themselves making decisions about whether or not they want to pursue aggressive treatment. The physician has said there is nothing more they can do and the merciful thing would be to keep the patient comfortable for the days they have left. The family asks if they are giving up if they don’t keep trying to fight the illness. If the patient stops breathing, should they be resuscitated? What do they do if the patient stops eating? Do they force the patient to eat through a tube? Caregivers ask if they are hastening the death if they don’t force the patient to eat. Has the family ever discussed these issues with the patient or with each other? Do they know what the patient wants? Many of the questions that families struggle with have no right or wrong answers. The hospice team is well equipped to provide information and educate about what is happening physically in the patient’s body. They are also prepared to look at the emotional and spiritual implications of these decisions.
Someone to come alongside
A long illness can drain the patient and the caregiver, both physically and emotionally. We, as human beings and as God’s children, are not meant to face this stressful time alone. We need someone to come in alongside and face the uncertainties that lie ahead with us. That someone can be the hospice team. We are all working for common goals: that the patient will have meaningful days for as long as he is here, that all services will be done in a way that respects the patient’s right to be treated in a dignified manner, and that the patient will have a peaceful death. This is all done in an atmosphere that supports the family and helps prepare them to face the loss ahead.
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