Understanding the Hospice Patient’s Ordeal

Hospice Patient

Dr. Saul Ebema

 

My father always used to say, “Life is short!” as a little child, I didn’t know what he really meant until he died. The reality is that death is an inevitable part of the life cycle. Even though each one of us is aware that we will die someday, the majority of people do not stop to think about what this truly means. For many hospice patients dealing with the reality of end of life, the awareness that death is imminent and is no longer some far off future event that will take place, often brings hidden fears they may have about death to the surface.

         Questions that I often get asked include; “Who will look after my family when I am gone? What did I do to deserve this? Will I be remembered? At the time of such a colossal crisis, the dying person has to continually adapt to their changing reality, and these questions and concerns often contribute to heightened states of psychological pain and stress.

          One of the key sources of psychological pain at the end-of-life appears to surround relationships. Hospice patients worry about people they will leave behind such as spouses and children. They may be concerned about strained relationships, and are faced with the urgency to resolve unfinished business.

          What I have learnt over the years as a hospice chaplain is that, improved perception of these processes will allow interventions to be designed to minimize suffering and improve the quality of life of patients living with and dying from serious illnesses, and those accompanying them.Of importance to facilitating timely interventions is a clear understanding of pain and suffering!

            A lot has been written about pain in the last decade but pain is a complex phenomenon produced by the interaction between physiological, psychological, social, cultural, and spiritual components. Many scholars and clinicians agree that physiological and psychological factors interact to produce pain perceptions and pain behaviors (Brown, Chen & Dworkin, 1989).

           Some scholars readily distinguish between psychological pain and suffering claiming that suffering is perceived damage to the integrity of the self, and pain is a perceived threat to one’s biological integrity (Chapman & Gavrin,1999). The inherent problem with this position is that their argument accepts a dualism of the mind and body.

A more practical or holistic interpretation may be that an individual must be treated as a unified whole, and their pain and sufferings may be interconnected with many aspects such as physiological, spiritual, psychological, or social factors. That is to say, the mind and body are not separate and do not operate independently of one another: psychological suffering may have roots in physical factors; physical pain maybe influenced by psychological or social factors, et 

 

         Whether it is called psychological pain or suffering it is important for chaplains and hospice clinicians to address and treat this “pain” and work together with the patients to reduce their “suffering” no matter from what source it originates (i.e., mind or body).

Also of importance in facilitating timely interventions is the understanding of Anticipatory Grief hospice patients deal with.

         Grief is the natural, active process that occurs in response to any type of loss. A specific focus of grieving has been on anticipatory grief, which is the grief experienced by an individual leading up to his/her death, and the grief that is experienced by those supporting the dying person. Engaging in the work of anticipatory grieving includes such tasks as changing assumptions, adapting to role changes, and, experiencing feelings of sadness, depression, and anxiety (Rando, 1984).

Persons who are dying prepare for their death by mourning the losses implicit in death. Periyakoil and Hallenbeck (2002) suggest that this may include mourning: separation from loved ones, simple pleasures of life, missed opportunities, future losses, and adjusting to a radial change in self-image. Patients often grieve their former self-images as they become more dependent on others, and patients may feel that a piece of their self-identity has been lost. Accompanying losses include: loss of physical functioning, inability to perform intimate tasks for oneself, loss of dignity and privacy; and, social, and economic losses to name a few (Katz & Sidell, 1994).

          Chaplains can work with patients more effectively in helping them express their grief, discuss and process their losses. Patients benefit from the opportunity to express their feelings of grief; however family members and those involved in the care of the dying person often try to shield each other from their grief (Keitel, Zevon, Rounds, Petrelli & Karakousis, 1990). ‘

          Unfortunately this type of avoidance might lead to a disconnection or withdrawal of the dying person from his/her environment and is important to acknowledge because the taboo nature of discussing death impacts how dying persons interact and dialogue with those closest to them and their health care providers, and vice-versa.

References

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  4. Bailey, L. M. (1984). The use of songs in music therapy with cancer patients and their families. Music Therapy, 4(1), 5-17.
  5. Berscheid, E. & Peplau, L. A. (1983). The emerging science of relationships. In H. H. Kelley, E. Berscheid, A. Christensen, J. H. Harvey, T. L. Huston, G. Levinger et al. (Eds.), Close relationships (pp. 1-19). New York NY: W. H. Freeman.
  6. Brenneis, J. M. (1997). Spirituality and suffering. In W. C. Parris (Ed.), Cancer pain management [p. 551). Boston, MA: Butterworth-Heinemann.
  7.  Bruscia, K. (1995). Images of AIDS. In C. Lee (Ed.), Lonely Waters (pp. 119-123). Oxford, England: Sobell.
  8.  Byock, I. (1996). The nature of suffering and the nature of opportunity at the end-oflife. Clinics in Geriatric Medicine, 12[Z), 237-251.

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