What is important in the end-of-life care?
What is important in the end-of-life care?
This paper is devoted to study of person’s experience of dying in nursing home and the importance of attention to cultural and spiritual needs when it happens. The main focus is on a story of a 15-year-old boy Michael Cantos who has recurrent metastatic Ewing sarcoma and his family getting along with that terrible diagnosis. Except health problems his family also had cultural and spiritual problems, because boy’s parents and grandmother were born in the Philippines and emigrated to the United States about 30 years ago.
That’s why parents and grandparents had different points of view on problems that occurred during the time Michael was in hospital. The hardest thing when someone has a terminal prognosis is to accept this fact and learn to live knowing how much is left for one to live. So the paper is about how this family deals with the issue and what difficulties they have in this hard situation. Summary Michael lived with his parents, two younger siblings, and his paternal grandmother.
And then this family finds out about Michael shocking diagnosis. Author writes that, “When Michael was first diagnosed, he was told that this type of cancer was aggressive and had already spread from the primary site in his pelvis to his lungs. Treatment consisted of surgery, a year of chemotherapy, and six weeks of radiation,” (Mazanec, Tyler, 2003, p. 50) not to mention that this treatment is exhausting, it won’t cure the cancer it just slows its spread a little.
So a 15 years old boy and his family find out that their son is going to die. “Whenever Michael asked if the cancer could kill him, the team members have responded both truthfully and with reassurance, saying, “Some patients die, but we’re all fighting very hard to cure you,” (Mazanec, Tyler, 2003, P. 51). Michael understands that things are getting worse and asks if his mother can stay overnight in the hospital with him earlier he has preferred to spend time alone or with friends.
The boy also tells his parents that he wants to hear his scan results and about his treatment options at the same time they do. And it was a problem – his parents were shocked, because it is their duty to protect their child from “bad news” but they agree to honor his wishes. But here comes another problem – this decision deeply upsets Michael’s grandmother. Then Michael says, “Why does Grandmother always have to pray the rosary over me – doesn’t she know it doesn’t work?
” – in this question I see a big problem that occurs when something bad happens and each one (religious or not) asks – “why did it happen to me or to my family? ” Religious people don’t ask that question because it’s “God’s will” but still I think they have a doubt “How this God can be so cruel to an innocent child? ” Some people in such situations lose hope an faith, they stop believing in God because it doesn’t make any sense – God is merciful and forgiving and at the same time a child or someone else suffers and it’s unfair.
In the article it is outlined that “RN expresses frustration with the grandmother’s “constant interference,” noting that the grandmother questions the parents’ decision to share information with Michael,” (Mazanec, Tyler, 2003). So this case illustrates how ethnicity, age, and religious and spiritual beliefs can affect end-of-life care, one can conclude that cultural competence demands nurses to know much about patients and their family members, and their ethnic and religion belonging.
Nurse has to pay attention to communication style, family structure, and ways of responding to illness because these are the areas in which cultural groups may vary. Also one has to consider the ways patients and families express themselves verbally when discussing illness and death, evaluate their beliefs about and attitudes toward pain, determine who among them has decision-making authority, and consider the spiritual beliefs of each patient alone and in the context of his family and community.
Author says that, “The needs of a given patient and family will depend on how closely they identify with a particular group,” (Mazanec, Tyler, 2003). There are two categories of barriers to cultural competence: first one is related to providers and second – is related to systems. The fist group arises when individual providers lack knowledge of their patients’ cultural practices and beliefs or when providers’ beliefs differ from those of their patients.
For example, “some Pacific Islanders may ask that a window remain open when a family member is dying, to allow the soul to leave” (Mazanec, Tyler, 2003). System-related barriers exist because most facilities haven’t been designed for cultural diversity, favoring instead a one-size-fits-all approach to care. It’s also important to consider the role ethnicity plays in communication, family values such as respect for elders, and beliefs about and practices related to illness and death.
Michael parents have traditional Filipino values, such as respect for elders, but they also think their son is mature enough to have his wishes honored, but his grandmother does not agree: she says that it’s God’s will that Michael is ill, that prayer is the only force that can save him, that it’s the parents’ duty to “protect” the boy from knowing his terminal prognosis, and that her wishes must be respected because she is the family elder – there we have a cultural conflict.
According to Mazanec and Tyler (2003), “In the United States, decision making at the end of life is based on the values of the dominant Euro-American culture”, (p. 55). Another problem is a decision making in families with terminally ill children. But still in many non-Western cultures families prefer to receive information first and filter what is given to the patient, regardless of the patient’s age. And then a conflict occurs when the beliefs and wishes of family members differ from those of the patient, the team members, or both.
The important thing is to respect patient wishes if the patient desires and is capable to understand disclosure. Patients from cultures that place value on suffering may refuse pain medication – for example, some Chinese patients may believe that suffering before death is a way to atone for past sins, and that if they don’t suffer while alive, they’ll have to suffer later. Conclusion The main thing for family and is to understand the patient’s need for information and learn that hope can coexist with terminal illness, in spite of some family members believe that truth about the diagnosis will do more harm than good.
One has to remember that spirituality and emotional support very important in end-of-life care, so the patient can find sense in dying as in life. Another important thing is if patient relationship with God is different from his family members, it is still meaningful and important to him. Different cultures and religions can coexist and family members and hospital team have to learn to respect patients with terminal diagnosis needs and decisions. References: 1. Cultural Considerations in End-of-Life Care, Polly Mazanec, Mary Kay Tyler, American Journal of Nursing, 2003. – V. 103. , № 3. – P. 50 – 58.