Chapter 29 1. Identify fears about communicating with clients near the end of life 2. Discuss strategies for caring communication near the end of life 3. Identify strategies for creative expression for clients at the end of life and their families 4. Discuss the role of self-care for the nurse when working with clients at the end of life and families 5. Participate in exercises to build strategies for caring communication with clients near the end of life and their families In caring for people at the end of life, you will hear two terms you need to understand: hospice care and palliative care. “Hospice is a program of care provided across a variety of settings and based on the understanding that dying is a part of the normal life cycle. Hospice promotes the idea of ‘living until you die’” (American Association of Colleges of Nursing and City of Hope National Medical Center, 2000, p. MI-8). Hospice, considered a philosophy of care, supports families during the dying process and in bereavement (Martens, 2009). Hospice care is provided in the home, residential settings, and designated hospice houses. This movement is credited to Dame Cicely Saunders and is the foundation of the emerging field of palliative care. There can be Medicare and Medicaid support for hospice care, which is usually offered in what is believed to be the last 6 months of life. Palliative care is “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families” (World Health Organization, 1990). Why might you, as a nurse, be uncomfortable or unsure about how to communicate with clients who are approaching the end of their lives? Stop a moment and consider this and then see Box 29-1 and reflect on these ideas. There are several reasons (see Box 29-1). Yes, when we work with the dying, we can no longer deny our own mortality. Yet, from becoming clearer about the finite nature of life, we can make better choices about how to live our own lives with more beauty, connection, and meaning. When we accept our own mortality we can be more fully present for our clients. We can listen without fear of being inadequate at this sacred time in life . . . and the listening is enough. We are not called to give answers but to give of ourselves as a companion for the journey (Nouwen, 2005). Why is it hard to watch someone we love or have come to love die? People we love become a part of us. When they die, it is as if a part of us has died, too. This is the source of the grief, the separation. On holidays or birthdays or the anniversary of the death of a loved one, we are more clearly aware of the loved one’s absence. By remembering them, we make them a part of ourselves again, we re-member them. “Remembering them means letting their spirits inspire our daily lives” (Nouwen, 2005, p. 205). Some people experience an even greater closeness after death. Grief counselors may encourage the bereaved to talk to the person who has died and listen to what they think would be the response and may suggest reflecting on how knowing the person changed his or her life (Loomis, 2009). Communication at the end of life is a process of interactions through which a relationship is created. These interactions are an exchange of thoughts and ideas and feelings, communicated verbally and nonverbally. “Dying is more than a medical event; it is a spiritual event” (Young and Koopsen, 2005, p. 175). Staff and family can help create an environment in which personal transformation, reconciliation, and the expression of love can occur. Essential qualities of being with the dying are acceptance, being calm and open-minded, listening deeply, and proactive intervention, advocacy, on behalf of clients and their families (Norlander, 2008; Seno, 2010). Consider the following: 1. Be present for the person, relating to the person and not the illness. 2. Pay attention by listening, without judgment, to the needs, wishes, and personal wisdom of the dying person. Compassionate listening means setting aside your own discomfort and those automatic, reassuring responses that help the listener more than the person who is dying. Compassionate listening is letting the person talk in whatever way they need to talk (Davis et al, 2004). It is OK to laugh with your client or just sit silently. 3. Show compassion by gentle touch, using lotion on your hands, or giving a backrub. Offer a cool cloth when your client is perspiring. 4. Create a peaceful environment, perhaps lowering the lights or opening the blinds to let in the light if desired. These considerations create a climate in which thoughts and feelings can be shared openly (Box 29-2) (Corr et al, 2003; Young and Koopsen, 2005).
Communicating at the end of life
Considerations for the nurse in end-of-life care
Caring communication near the end of life
The process
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Communicating at the end of life
Moments of Connection. . .