By Mary Anne Bonner
These comments are based on research reported in an unpublished article and my experience as a chaplain to persons on dialysis. I functioned as part of an interdisciplinary team that included nursing, nutrition, social work, and pastoral care.
At Good Samaritan Medical Center in West Islip, NY, we studied 102 patients who received treatment in off-site facilities. The team affirmed that the patients were experiencing pain and depression and comorbid diseases that complicated their medical condition on dialysis. Their diet and fluid intake was limited. They had family needs because of their treatment, and they asked questions regarding the difficulty they were experiencing. Spiritual pain often underlay many of their concerns, as well as moral questions that accompany the consideration of stopping dialysis. We questioned how best to serve them.
Our study looked at patients who had been on dialysis for over a year. Using both quantitative and qualitative methods, we learned that quantitative did not provide much insight. Using a grounded theory approach, we learned more about the patients. There were three parts to our study:
Demographics: Age, gender, religion, marital state, living situation, length of time on dialysis, comorbidities.
Quantitative Tools: Administration of the KDQOL36 (burden of kidney disease, mental component summary, physical component summary, symptoms and problems, effects of kidney disease on daily life) and spiritual pain factors (meaning, forgiveness, relatedness, and hope).
Interview Question: Can you tell me about three concerns you have with being on dialysis?
In parentheses below is the number of responses in each category. There was no forced choice, so it was not choosing one category over another. The categories were developed after the responses.
Categories: Faith expressions (19); financial issues (8); fear and anxiety (40); medical concerns (48); family issues (25); being a burden on the family (22).
The four components of spiritual pain: Meaning (41); relatedness (10); forgiveness (17); hope (23).
Three components of the KDQOL36: Burden of dialysis (29); mental stress (38); ADL concerns (4).
The remaining categories: Transportation (7); mortality (29); transplant (13); nutrition (12); recreation (10); pain (8); issues about the machine (21); loss of independence (31).
Statements during the interview phase included:
Quality-of-Life Issues: Stuck on the machine forever, I shouldn’t be on dialysis. It is the doctors’ fault and I have filed a lawsuit. The thought of this can be overwhelming. Tired of dialysis. I don’t want my family to see. It bothers me that I am causing my family to worry. Being on dialysis gets me down.
Concerns About Mortality: You never know and plan for the worst. My wife and I go to a lot of funerals and ask when will it be our turn?
Faith-Related: God and my daughter give me energy. Rely on Bible readings. I pray to the Lord Savior and believe. I am drifting spiritually but I hold on to what I know and rely on God. God has told me to be patient
Implications for Chaplains
The chaplain should be well-versed in the process of dialysis and keep in regular communication with the staff. I found the use of the spiritual pain tool developed by Richard and Mary Groves to be highly useful. It does not require the patient to understand the word spirituality, but if there are issues with meaning, relationship, hope, or forgiveness, there will probably be spiritual pain issues that should be addressed. Our sample revealed growing need in these fields.
In the grounded theory analysis, patients expressed issues with meaning and mortality.
The chaplain is the member of the team who can best address these. Sometimes the chaplain is called in because a longtime dialysis patient died at the facility and it affects all patients, as well as staff.
The chaplain can be a presence as the patient begins dialysis. These patients are in and out of the hospital because they are experiencing complications due to comorbid conditions and advancing renal disease. The chaplain is a resource for the moral and ethical implications of choosing dialysis and also in clarifying the issues with forgoing treatment. The chaplain is knowledgeable about different faith traditions and what implications these may have. For Catholic patients, the burden vs. benefit becomes a guideline to use.
It should be stressed that palliative care should be a concern throughout this process, and the chaplain has a major role. Patients and chaplains should discuss forgoing dialysis before it is a crisis situation. The difficult part of this decision is that the patients are fully aware that when they stop dialysis, they will die. One statement said it well: They accept death, they do not choose death. We had trained a team of spiritual care companions to visit these patients, and their gift of time was invaluable. They provided a presence, but could also alert the chaplain of issues such as thinking of stopping dialysis.
In summary, the chaplain can provide support, encouragement, and help patients find their own spiritual strength. The chaplain is a familiar face throughout the process and a resource to both patients and their families. Staff also turns to the chaplain for support. They are with these patients for prolonged periods of time and come to know the patient, and when one dies, staff also experience grief and spiritual pain. Every year we have a remembrance service to provide a place for family and staff to honor those who died and a safe place to grieve. There is a unique need to serve these patients with specialized knowledge.
Edited from “Perceived Needs of Persons with End Stage Renal Disease on Dialysis: A Quantitative and Qualitative Study of 100 Patients” by Mary Anne Bonner, MS, BCC; Joanne Faber, RN; Ellen Marchese, LCSW; and Patricia Eckardt, RN, PhD.
