By Dr. Eve Namisango
IAHPC Board Member
The experience of living with terminal illness can be overwhelming as the patient and family must deal with the unexpected reality that life can come to an end at any time, and the associated suffering. More so, as the disease advances, patients may lose functionality, and are unable to engage in activities that previously gave meaning to their lives. This may raise philosophical questions about the purpose of life in this state, and how one can learn and grow from this experience.
Literature shows that despite the function impairment and suffering associated with terminal illness, the spiritual/existential domain has enormous potential to grow. It is less surprising that it has been identified as an important domain of well-being in patients with terminal illness. Indeed, tapping into this resource could help patients build the resilience to cope positively and make good use of the present moment.
Spirituality/existential well-being must be understood in the context of one’s cultural beliefs, as patients and caregivers may strand several worlds of spiritual/existential well-being (i.e., modern religious, cultural, and personal philosophical beliefs). Because most African cultures tend to avoid discussions around death and dying, palliative care providers may be hesitant to introduce advance care planning or end-of-life conversations with patients and their families.
In line with most religious values, only the supernatural power knows one’s hour of death, a belief that should be respected. This may explain why advance care planning for palliative care patients is not a common practice in Africa.
Regrettably, denial, suppression of the reality, and psychological defense mechanisms are commonly used to affirm life for the dying patient. While we have a duty to respect these boundaries, some patients appreciate the initiation of conversations about advance care planning as it helps them to prepare for the reality, by attending to priorities of unfinished business.
Given that the lived experience of human beings is largely connectedness, people have relationships that matter to them and these deserve good closures.
Part of what we can do to help our loved ones in case we die is to “put our house in order.” Literature suggests that the majority of patients may be aware that they are dying; some reportedly see visions of their deceased loved ones calling them to join them in the next world. Understanding that death is near may be reassuring to patients; they may be definitely okay talking about death when the environment is suitable. I guess the question is how to navigate this sensitive territory.
Supporting patients to achieve spiritual healing may make this process easier and culturally acceptable.
The contextualization of spiritual healing discussed here is based on my work on this topic in adult patients with advanced cancer. Patients experience spiritual/existential healing when they live in the “present moment.” This is realized when one arrives at acceptance, and absorbs the fact that reality cannot change: it is what it is. Since death is not a punishment, or a curse, one does not have to be angry with the infinite power or any human being over this diagnosis.
This realization becomes a starting point for experiencing peace and the journey to spiritual healing. It puts an end to questions that may never be answered and the pressure to change what cannot be changed; this alleviates anxiety, anger, and psychological distress. Patients then begin to focus on the things they can control, paying more attention to priorities and the part of their self that has potential to grow.
Life becomes good, when you have done this work in your inner world. I have accepted this situation, it is not because I am a sinner, because no sin is too big for God, so he cannot punish anyone for their sins. This has happened but I have accepted it, so I am not angry with any one or the world and I am not looking for any answers (laughs). I am peaceful, I am happy and ready for anything, even death. I did not expect death to come soon, but it is here, so I am pushed to remember that all power belongs to God. That said, I have the NOW to do the critical things (laughs) that is what I am focusing on.
— Adult cancer patient 1
When this level of work is done, advance care planning is easier, and the inner journey usually brings growth and an opportunity to use the power of one’s beliefs. For those who believe in life after death, they are able to nurture that hope; some find answers to their philosophical questions, and others appreciate the gift of life more than ever.
Well, Christ said, “this world is full of suffering, but behold I have defeated the world.” This gives me courage, not to complain about the suffering, so I have peace. I also know that I will get a reward in the next life, because Christ has defeated the world. So, why should I fear something I cannot change. I am peaceful about the fact of death, grateful and happy, that is my typical day.
— Adult cancer patient 2
1. Abbott KH, Sago JH, Breen CM, Abermathy AP, Tulsky JA. Families Looking Back: One year after discussion of withdrawal or withholding of life-sustaining support. Critical Care Med 2001; 29(1): 197-201.
2. Nathan Cummings Foundation, Fetzer Institute, George H. Gallup International Institute. Spiritual Beliefs and the Dying Process: A report on a national survey. George H. Gallup International Institute: Princeton (NJ), 1997.
3. George LK. Research Design in End-of-Life Research: State of science. Gerontol 2002; 42(Special Issue 3): 86-98.
4. Byock I. The Meaning and Value of Death. J Palliat Med 2002; 5(2): 279-288.
5. Namisango E, Katabira E, Karamagi C, Baguma P. Validation of the Missoula-Vitas Quality-of-Life Index among Patients with Advanced AIDS in Urban Kampala, Uganda. J Pain Symptom Manage 2007; 33(2): 189-202.
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