Hospice is considered the model for compassionate care for people facing life-limiting illnesses in the U.S., providing patients and their families with medical and nursing care focused on pain and symptom management, as well as emotional and spiritual support.
The National Hospice and Palliative Care Organization (NHPCO) estimates 1.5 million to 1.6 million patients received hospice nursing care and services annually.1 Another estimate suggests that in 2013 nearly 42% of all deaths in the U.S. were patients receiving some form of hospice amenities.2
The average length of stay for patients in hospice was 18.7 days in 2012, according to NHPCO, which also noted that the patients were 56.5% female and 43.6% male, with their ages ranging from under 24 to 85-plus.
The primary diagnoses requiring hospice services were cancers, followed by debility, dementia, and heart and lung disease.1
The purpose of this paper is to provide nurses with the tools they need to provide holistic care to dying patients, discuss components of a good death, and ascertain ways for nurses to provide themselves with self-care when dealing with patients who sometimes do, unfortunately, die alone.
Holistic Care for Dying Patients
As defined by Mosby’s Medical Dictionary, holistic healthcare is comprehensive patient care that considers physical, emotional, social, economic and spiritual needs of the person, response to illness and effects of the illness and the ability to meet self-care needs. Holistic nursing is a modern nursing practice that expresses this viewpoint of care, according to Mosby’s.3
There are several aspects of holistic care when providing for the dying patient, including touch, talking, solitude, spirituality, comfort measures, patient/family emotions, and supporting the psychosocial needs of all involved.
Touch can be soothing to patients. Sharing conversation can establish trust and open-ended questions can encourage discussion and reflection. Patients can experience solitude, however in a positive way, by listening to their own voices, their feelings, fears or anxieties. Hence, nurses need to assess patients to see if they are experiencing feelings of meaninglessness, guilt, regret or unresolved religious questions-which could lead to spiritual distress.
Man (2007) states that the word spirit is of Latin origin meaning breath, adding, “like breath, spirit is essential to life, though it is very difficult to define and describe.”4 Spiritual distress has been associated with poorer patient outcomes, including emotional despair, depression with suicidal ideation, pain and anger at God or another higher power, according to the Hospice and Palliative Nurses Association.5
It is the job of a nurse to ensure patients are free of pain and symptoms are well controlled, and educating patients and their families is crucial in this regard.
Stages of Dying
Hospice patients often are worried about unfinished business, and worry about their loved ones’ well-being. Patient and family emotions can play a significant part in the grieving process at the end of life. Patients may have unresolved issues with their loved ones and may want to seek forgiveness.
It is important for nurses to be familiar the stages of dying and to know that each patient is unique, in that these stages do not follow any specific order and patients could go in and out of any phase, or never get beyond a stage.
As described by Kubler-Ross (1969), the stages of dying are denial, anger, bargaining, depression and finally acceptance. 6
Denial is customarily the first stage, but may be revisited countless times. Denial is our body’s first defense mechanism to death. People refuse to believe that this is happening to them. Anger is usually the second stage, this is the “Why me?” stage. Patients may begrudge others who have life., and family, friends and healthcare workers are typically targets of anger.6
Bargaining, the third stage of dying, occurs when anger has passed. Now the person begins to bargain for more time, one more birthday or one more Christmas. Often this stage is done in private.6
Depression is the fourth stage, and sometimes called the mourning stage, there may be a lot of crying or no words at all.6
Acceptance is generally the last stage where patients become calm and peaceful. This is the stage that death is finally accepted (Kubler-Ross).6
A Good Death
As each birth is individualized and unique, so is each death. Several key components play a part in a “good death.”
Components of a good death include adequate pain and symptom management, homelike environment, life review, resolution of conflict, time with loved ones, saying goodbye, reassurance that they are not “alone”, family support and dignity and respect for the patient and family.
Ensuring a good death is a major challenge for healthcare providers. Nurses owe it to their patients to give to him/her what is needed to leave this world in whatever manor they choose. “Dying is a phase of living, and death is the outcome” (Encyclopedia of Death and Dying, n.d.).7
Adequate pain and symptom control is a crucial component of a good death (Bass, 2010). Pain is subjective; it is what the patient says it is. Pain causes great suffering and impairs quality of life (Bass, 2010).8 It can cause sleep disturbances, hopelessness, and loss of control, impaired social interactions, anxiety and distress.
Many patients fear of dying in pain. Creedon and O’Regan (2010) report that pain is debilitating for patients requiring end of life care and unrelenting pain is what is feared the most. Pain management is not always effective, thus causing anxiety and distress at end of life (Creedon & O’Regan, 2010).9 Caregivers have an obligation to ensure patients are kept comfortable and free of pain. Superior communication with patients, families and physicians is critical for effective pain relief.
Symptom management, like pain management is also a very important element to a good death. Nurses need to assess and intervene as symptoms occur to alleviate discomfort. Symptomology relates to factors such as diagnosis (cancer, heart disease, lung disease, neuromuscular diseases) with each being unique to its disease process.
During the end-of-life process, patients may want to be surrounded by loves ones, and feel as close to their family as possible. A helpful way to do this is for caregivers to provide a safe and relaxed environment, whereas the patient has a maximum degree of control. Allowing patients to make decisions and have choices will provide them with the sense of autonomy. Patients and families are encouraged to adorn rooms with pictures, or any other objects that will provide a home-like feeling or atmosphere.
Protecting Dignity & Showing Respect
Life review can be a helpful tool when communicating with patients. For many people, completion or discovery of meaningfulness at end of life, involves evaluating his or her life. This is their last effort to explain, integrate and reconcile everything that has happened in the course of their lifetime.
Nurses can allow time for our patients to reminisce, reflect and talk as needed.
Nurses are never to judge, but be supportive and respectful. Nurses can implement life review techniques for patients and families to assist with conflict resolution, time spent with loved ones and saying goodbye. Families with open communication regarding death and dying have less difficulty saying goodbye and letting go.
A good death involves the whole person. This includes body, mind and spirit. Not only is this about pain and symptom management, but the person as a whole and unique being. Nurses need to consider the person in context of their lives, values and personal preferences, not just as a disease, a case, or patient. Furthermore, a holistic approach encompasses spirituality as well. Nurses must be aware of their own spirituality, and how it can affect the care that is provided. Taking care of the dying patient holistically involves the entire interdisciplinary team.
Dignity and respect at end of life is crucial to providing end of life care. Li, Richardson, Speck and Armes (2014) believe that a sense of dignity is linked with how a person is viewed by themselves or others, and if they are valuable.10 According to Valente (2008) nurses have a major role in improving care at the end of life by providing counseling, symptom management, education and support.11
Non-pharmacological approaches can include aroma therapy, such as baking cookies or cakes, scented oils, or candles can reduce anxiety. Whitehead (2011) states that music therapy purposefully improves patients’ quality of life by relieving symptoms, addressing psychological needs, offering support, facilitating communications and meeting spiritual needs.12
Animal assisted therapy (AAT), according to Halm (2008) is an intentional healing modality used to achieve therapeutic goals through a facilitated interaction amongst patients and trained animals. According to Halm, the effects of AAT attribute to “contact comfort”, which is a tactile process of unconditional bonds created between animals and humans.13
Self-Care for Nurses
Nurses must learn to manage one’s own emotions including anger and sadness. If experiencing intense, negative or overwhelming emotions, allow time to listen rather than speak. Allow time to grieve each and every time a death occurs. An emotion often visited by nurses in caring for patients at end of life is introspection about the nurses own family and self.
In order to give the best care, nurses should have an understanding and spiritual belief system within themselves about death.
Nurse’s experience of the dying process can influence on how the dying persons description of pain and treatment is interpreted. Therefore, self-awareness is essential to ensure care is congruent with patients’ needs and not caregiver’s needs. Nurses must set aside time for themselves to contemplate, meditate, pray if applicable, remember, cry and think.
In managing one’s own physical self, nurses should provide time for themselves for proper nutrition, exercise, sleep/rest and for hobbies that are enjoyed.
Because millions of patients receive end-of-life care annually, nurses need to be prepared not only to deal with death, but holistic care of the dying. A holistic approach to care for patients involves all aspects of care. Nurses need to exemplify their expertise in their knowledge to care for those in this delicate state. Holistically, nurses need to provide systematic pain and symptom management care to patients, comprehend components of a good death, and finally seek ways to care for themselves when dealing with patients’ death.
References for this article can be accessed here.
Kristen Donaghue is nurse educator and LaVerne Thomas is assistant nurse manager in the Community Living Center, both at Central Texas Veterans Health Care System, Temple, Texas.