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Nurse's role in Palliative Care

By Rupa Inayat Ali

It is deeply disturbing to consider the tragedies that could be fall us, so understandably we direct our thoughts elsewhere Loss of child or spouse, terminally illness of family member throwing their victims into state of profound distress and disintegration. As a nurse, it is our duty to comfort loss and grief regularly in all health care settings. For some clients, loss results from changes in health and resulting effects on lifestyle For others, loss result from the dying process, or from the eventual death either of loved one or of the self. According to the federal interagency forum:

The six leading causes of death among Americans ages 65 years or older are heart disease(44% of deaths from these six causes),Cancer (29%),stroke(11%),chronic obstructive pulmonary disease(COPD)(8%),influenza and pneumonia(4%),and diabetes(4%).Five of six are chronic illness that are often protracted and frequently involve chronic disabilities that may be both financially burdensome to the patient and family as well as taxing to the health care system. And the prevalence of each illness among the same age group has increased between 19984 and 1995.”

We must understand the physical and psychological effects of dying and death to provide appropriate care and support to clients and family members as they work through grief and the life changes associated with loss. The purpose of writing this paper is that to make the understanding how loss affect you and as a health care professional’s Furthermore how could you help your client in this grieving process and what are the psychological , somatic and behavioral changes occur due to loss and grief in terminally ill patient . According to Harkreader (2007) “psychological response, after the shock dissipates, may be extensions of those begun at the initial time of grieving. This is period when the mind clearly understands that the loss is irreversible and life has change irrevocably”. The person who is passing through loss and grieving can show somatic, psychological and behavioral symptoms. Psychological symptoms which include spiritual distress, anger, helplessness, and person may show emotional liability by crying spontaneously. Whereas, Somatic response can include continuing somatic distress similar to that experienced early in grief process such as weakness, panic attack, and gastric distress or hollow feeling in stomach .Depressed immune function has been observed with a correlated increase in the physical illness. Complain of fatigue are common .Eating and sleeping patterns may be disturbed as well, leading to either increase or decrease activity level. In addition in behavioral responses social withdrawal is common because depression and feeling of helplessness make the bereaved reluctant to engage in interpersonal activity in public poor hygiene and inadequate self care may result from depression as well Crying may be continue for extended period. I am oncology nurse while working I had come across with patient who is terminally ill had breast cancer stage 1V, was only 23 years old was on last stage she was feed up of fighting with her disease. She always said that I don’t want to die please help me. At that time we all nurses were busy in doing our routine task we does not have time for that poor patient we left her on the mercy of healthcare professionals .This speechless patient want so much to say but unable to speak. The patient was always crying and she refuse for the treatment she always blame that doctor was unable to identify the things on right time. At that time I was unaware of that what the patient is suffering for, how could I and other health care team member could help her in her grieving process. Besides this what are the psychological and behavioral changes are going on in patient. According to kubler-Ross (1969) “There is greater restlessness, verbal communication, and more nonverbal communication the knitted brow, sighs, wet eyes, smiles, hand gestures, perhaps an empty or astonished look.” Communication between patient and family could be challenge for the family because both are passing through intricate time of loss and grieving. When the nurse provides end-of- life care during the dying process, the focus of care is both dying adult and their family. Nurses, therefore, have to be prepared to address the problems associated with chronic medical conditions as well as the issues related to their dying and deaths. According Wanzer et al (1984) “The goal is to manage symptoms effectively in order to help the patient move through the final stages of the disease as comfortably as possible” .Nursing responsibility grow in complexity and intensity as the patient and family face the crises in which they have little experience and expertise . Lawis (1982) describe the goal of nursing care as “one nursing goal is to help the patient and families retain decision- making capacity and control as long as possible and to help them achieve goal s and tasks that are important to them at this point in their lives. A second is to help them to move through the dying process in a manner they see suitable (Benoliel 1985). While giving care nurses should knows the dying patients rights as said by Noyes & Clancy (1977)

1) Disengagement from the world.
2) Exemption from social responsibilities.
3) Continuing care and support from family and health care professionals.
4) Maintenance of status despite declining functioning.

When the patient is terminally ill the appropriate treatment is dependent on making exact differential diagnosis between the need to ventilate feelings and the need for knowledge. At that time purpose of nursing is to support participants through the experiences associated with terminal illness and dying with as much comfort and control as possible. This means educating the patient, required by the patient and family but on other hand do not increase the anxiety by providing too much information in one meeting which may lead to psychological problems such as panic attack and depression. In addition patient may feel powerlessness and helplessness because of their terminal illness not only the patient but family members primary care givers too feel helpless, immobilized and angry as they look the patient suffering and had fear of loss of loved one. Lewis explained “A nursing goal is to find areas in which both the patient and family experience success in achieving control.” As health care personal we should understand that patient is going through psychological trauma because patient has the fear of separation from family, they may be worrying about how children and spouse will manage, who will care for children or dependent parents, how the business will be managed. We can mange the terminally ill patient by providing palliative care. Palliative Care, according to the World Health Organization, 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 quality of life for persons and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with active treatment”(WHO, 1990). On other hand, The Canadian Hospice Palliative Care Association (CPCA, 1995) broadened the definition of palliative care to incorporate, “the combination of active and compassionate therapies intended to comfort and support individuals and families who are living with, or dying from, a progressive life-threatening illness, or are bereaved.” For future recommendation, I would propose the six dimensions of the Supportive Care Model provide the framework around which the Canadian Standards of Hospice Palliative Care Nursing have been developed. The Supportive Care Model (Davies & Oberle, 1990) was adapted to clearly reflect hospice palliative care nursing practice and then adopted as the framework for hospice palliative care nursing. The six dimensions are: valuing, connecting, empowering, doing for, finding meaning, and Preserving integrity.

1) Valuing: The hospice palliative care nurse believes in the intrinsic worth of others, the value of life and that death is a natural process.

2) Connecting: The hospice palliative care nurse establishes a therapeutic connection (relationship) with the person and their family through making sustaining and closing the relationship.

3) Empowering: The hospice palliative care nurse provides care in a manner that is empowering for the person and family.

4) Doing for: The hospice palliative care nurse provides care based on best practice and/or evidence-based practice in the following areas: pain and symptom management, coordination of care and advocacy.

5) Finding meaning :The hospice palliative care nurse assists the person and family to find meaning in their life and their experience of illness

6) Preserving Integrity: The hospice palliative care nurse preserves the integrity of self, person and family.

In conclusion, psychological, somatic and behavioral changes occur due to loss and grief in terminally ill patient but through Hospice palliative care nurses bring focused knowledge, skills and attitudes to the delivery of care to all persons and families living with advanced illness. The focus is on quality of life throughout the illness continuum, dying, and bereavement. Care is provided in the setting that the person and family choose. Hospice palliative care nursing has a commitment to public and professional education, leadership, research and advocacy in caring for the person and family living with advanced illness.