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Introduction
A palliative care nurse’s role can be very stressful and emotionally draining as we need to deal with a variety of emotions every day. This essay will discuss how being a member of the palliative care team supports patients at the end-of-life stage and their families in dealing with death.
Main Body
In the case provided, there is no denying that Sandy and her family are now facing her impending death and need all the understanding and support from the people around them. Caring for Sandy for the past three weeks and witnessing the deterioration of her condition directly affects me too. The nature of my work encourages me to form a close personal relationship with her and her family.
The focus of palliative care will be the patient and her immediate family. First, we discuss Sandy’s case. She is supposed to be at the peak of her life. In Erikson’s Stages of Psychosocial Development, she is at the Generativity vs. Stagnation stage (Erikson, 1963). Middle-aged people characterized to be in this stage have a strong urge to leave a legacy by helping the new generation. Sandy is supposed to be very productive as she adjusts the discrepancy between her dream and her actual accomplishments. Failure to achieve a sense of productivity results in psychological stagnation (Erikson, 1963). As it is, Sandy has been an achiever as a teacher way up to the time that her cancer reached its end stage a few months back. I would understand her frustration with her inability to continue a very fulfilling career due to her illness, as she is only forty-two but is already disabled from working. At the same time, I know that in the period when I cared for her, she slowly accepted that her cancer is putting an end to her life. Lying still in her bed, I know that she contemplates life and death. I remember the words of Kübler-Ross (1969) on death and dying:
Man has to defend himself psychologically in many ways against the increased fear of death and increased inability to foresee and protect himself against it. Psychologically he can deny the reality of his own death for a while. Since in our unconscious we cannot perceive our own death and do believe in our own immortality, but can conceive our neighbor’s death, news of numbers of people killed in battle, in wars, on the highways only supports our unconscious belief in our own immortality and allows us – in the privacy and secrecy of our unconscious mind- to rejoice that it is “the next guy, not me. (p. 28).
In Sandy’s case, the rapid deterioration of her health may make her face and accept the reality of imminent death and may worry more about the family she is leaving behind.
It is important for the multidisciplinary palliative care team to create an environment that encourages open communication (Jones, 2006). From the beginning, they should attempt to establish a good rapport with the patient and her family to enable them to understand their value system. The family and friends should not feel inhibited to talk about Sandy as it lessens their anxiety and provides them with opportunities to help the healthcare team in gathering information about the patient (Mazer, 2008). Even before Sandy’s prolonged hospitalization, it was her family who looked after her needs as a cancer patient and to is excluded during her most uncertain and crucial moments may sow roots of envy, jealousy and hostility in the family. That is why select family members (ex. Sandy’s husband) should be allowed to be present during bedside rounds or more complex procedures needed such as cardiopulmonary resuscitation, take in their opinions in planning Sandy’s care plan and updating them of Sandy’s condition regularly.
Mazer (2008) observes that physicians tend to dominate during family conferences and recommend that family members be given opportunities to express themselves. Frequent and honest communication makes family members feel included in their dying loved one’s case. This minimizes the chances of serious conflicts between the family and the palliative care team upon her death.
When the family expresses emotions that they find difficult to handle such as feelings of abandonment, guilt, anger and helplessness in reviving the patient’s health, the critical care team should focus their attention on them (Jones, 2006). In treating them with kindness, compassion, understanding, calmness and not judging them according to the negative emotions they display, the patient is also best served to know her family is treated well (Mazer, 2008).
There have much research and theories generated on how people face the reality of death. Several writers including Hecht, Weiner, Schoenberg, Kennedy, Edgar, Kübler-Ross and Oates have come up with stages of grief that people go through and have thoroughly discussed it to contribute to our understanding of the process (Flatt, 1987). It is important for me as the palliative care nurse, as well as for the people involved in the care and treatment of Sandy and the family and friends close to her to be aware of these stages because it entails very strong emotions that can affect their dispositions and perspectives on life and death and their relationships with Sandy and each other.
The Extended Grief Cycle (The Kübler-Ross Grief Cycle, 2011), based on the original Kübler-Ross Grief Cycle (1969) discusses stages of grief of people who may be unaccepting of the change that inevitably follows. This cycle may be explained to Sandy and her family so that they are aware of how they feel and find ways to deal with it.
The first stage is shock. The strong likelihood that Sandy may die anytime soon may first come as shock to everyone since just a few months back, she was a successful math teacher and it may be difficult to imagine her suddenly gone. Upon hearing the bad news, they may be immobilized and numb while the body protects them from the pain. When the truth sinks in, that is when they would feel the enormous emotional pain.
Next is the denial stage. When the truth is too hard to accept, they may choose to deny it and live life as if nothing happened. However, they would need to be constantly reminded of the truth, and if necessary, even be provoked to face it just so they can move on.
The next stage is anger. This is the outpouring of emotions that they may have repressed in the earlier stages and vent it out to anyone. Constant questioning and lamenting about how unfair it is to be in such a situation accompanies the anger. As part of the palliative care team, we should understand this stage and allow the grieving persons to express their anger even to us. We should remain to be reasonable and understand where all the anger is coming from. As soon as the anger is let out, clarity of mind may be expected after.
When the anger has been expressed and dissipated, the bargaining stage comes next. This is the stage when people in a state of grief try to find alternative ways out of the inevitable. For Sandy’s family, they may be more industrious in seeking help elsewhere or asking for a second opinion until they exhaust all means to reverse the imminent death. They bargain for a miracle and pledge an assortment of promises if only Sandy will get well. As part of the palliative care team who knows that her death is sure to come soon, giving false hope may provide temporary comfort and when Sandy dies, after all, may push the family into deeper depression. So it is best to be straightforward in reporting facts so that they are better prepared for the worst.
Upon realizing that there is nothing they could do to prevent the inevitable death from happening, they fall into the depression stage. They can be hopeless, devastated and unable to continue living normally. They may also tend to withdraw from their personal relationships with other people and keep to themselves. The palliative care team should be more supportive at this stage and accept them as they are while giving positive encouragement that there is light at the end of the tunnel and that they could get through this difficult period in their lives.
Although still in a state of depression, grieving people may come to a point when they realize they cannot be helpless forever and try some things that may be more proactive. This is the testing stage, which was not originally part of Kübler-Ross grief cycle (along with the shock stage), but it has been identified to be the initial step towards the acceptance stage. People in the testing stage now look into the practical things that could be done while there is still an opportunity. With the dying patient, the palliative care team will help her face her short future with courage and readiness, giving her as much control over it as they can.
Finally, the grieving persons come to the stage of acceptance and readiness to move on to the next phase of their lives. For Sandy, she may now be more empowered to plan out her short future along with the future of her family without her. She may help in making arrangements such as writing her will, organizing the details of her wake and burial/cremation and helping her family accept the inevitable (Stein & Sherman, 2005). The whole family may be encouraged to spend her last days remembering and creating happy memories so they help her towards a happy and peaceful death.
Mazer (2008) believe that allowing the family to freely express their emotions in all the stages of grief is part of their healing process. Allowing them to grieve the anticipated loss of Sandy eases their journey towards peaceful acceptance.
It is important to consider Sandy’s indigenous roots and her own cultural upbringing in how she sees death (Anderson & Devitt, 2011). Hockey et al. (2001) recommend dealing with death in a holistic sense and that includes the social and cultural contexts within which the death will be experienced. The palliative care team should be aware of Sandy’s cultural background in order to understand the affective, cognitive, behavioural, etc. dimensions of the whole family’s experience and expression of grief. Both the private experiences as well as the public expressions of grief, bereavement and burial practices are interconnected. Hockey et al. (2001) claim that “there is a complex and reflective relationship between emotionality, subjectivity and social practice” (p. 20), and this need to be considered and respected.
Some practical ways to alleviate the pain of death are suggested (Medenhall, 2003). The palliative care team should consider the patient’s anxiety in the responsibilities she will leave behind. Doing something about it greatly lifts a weight off the patient’s burdens. Helping the family with insurance and securing the necessary funds to pay for the hospital, medicines, funeral, burial or creamation and later, support for the family will greatly bring Sandy peace of mind knowing her family will be secure even without her. Coordinating with social services with regard to such matters will aid the palliative care team immensely (Roff, 2001).
Meanwhile, enjoining the family in helping Sandy’s last days happy and comfortable will result in many positive benefits. Going the extra mile in caring for Sandy such as provision of her favourite music, favourite foods, giving her baths and a change of clothes and beddings makes family members feel needed and useful.
Sandy needs to be assured by the family that she has not lived in vain. Reminding her of her accomplishments as a wife, mother, daughter, sister, friend, teacher and colleague who has touched lives of others significantly gives her the comforting feeling that she has lived a fulfilling and productive life.
Since the period of mourning starts after the death of the person, not before, it would benefit everyone concerned in the meantime to maintain a cheerful front and not to succumb to pressure and stress (Willis, 2005). It is difficult since death can be a long, drawn-out experience and talking about it helps. Prayer does, too, especially if Sandy and her family are religious. Knowledge that God is near, will do a world of good.
Mourning is a life-long process of trying to make sense of the loss of someone close. After his wife’s death, Tom Anderson, the playwright wrote, “Death ends a life but not a relationship” (Anderson, 1974). Sandy needs to be assured by the family she has accomplished sufficient work in her lifetime to be remembered and appreciated.
Conclusion
My role as a palliative nurse is instrumental in aiding patients like Sandy who are at the end of their life journey. Being able to holistically support her and her family in tying the loose ends of her life and sending her off to a happy death may pose as a challenge due to the heavy emotions involved. However, it is all worth it in the end knowing I have been a guiding hand in aiding her towards the end of her life journey and off to her eternal rest.
References
Anderson, I. & Devitt, J. (2011) The National Palliative Care Program: Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander peoples. Web.
Anderson, R. (1974). “Notes of a survivor.” In S. B. Troop & W. A. Green (Eds.)The Patient, death and the family. New York: Scribner.
Erikson, E. H. (1963). Childhood and society (2nd ed.). New York: Norton.
Flatt, B. (1987) Some Stages of Grief, Journal of Religion and Health, Vol. 26, No. 2, pp. 143-148.
Hockey J, Katz J and Small N (eds) (2001) Grief, Mourning and Death Ritual. Open University Press: Buckingham.
Jones, B.L., (2006) “Companionship, Control, and Compassion: A Social Work Perspective on the Needs of Children with Cancer and their Families at the End of Life” Journal of Palliative Medicine, Volume 9, Number 3.
Kübler-Ross, E. (1969) On Death and Dying, New York: Macmillan.
Mazer, M. (2008) Multinational Perspectives on End-of-Life Issues in the Intensive Care Unit, End-of-Life Communication in the ICU, pp. 1-33.
Mendenhall, M (2003) “Psychosocial aspects of pain management: A conceptual framework for social workers on pain management teams.” Social Work Health Care 36:35–51.
Roff, S. (2001) “Analyzing end-of-life care legislation: A social work perspective.” Social Work Health Care 2001;33: 51–68.
Stein, G.L., And Sherman, P.A. (2005) “Promoting Effective Social Work Policy in End-of-Life and Palliative Care” Journal of Palliative Medicine Volume 8, Number 6.
The Kübler-Ross grief cycle (2011). Web.
Willis, A. (2005) Grief and bereavement, Nursing Standard, Vol. 19 no. 31, 2005.
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