Journal of Pain and Symptom Management
Volume 40, Issue 6 , Pages 838-843, December 2010

Existential and Supportive Care Needs Among Patients with Chronic Kidney Disease

  • Sara N. Davison, MD, MHSc(Bioethics), FRCP(C)

      Affiliations

    • Division of Nephrology & Immunology, University of Alberta, Edmonton, Alberta, Canada
    • Corresponding Author InformationAddress correspondence to: Sara N. Davison, MD, MHSc(Bioethics), FRCP(C), 11-107 Clinical Sciences Building, University of Alberta, Edmonton, Alberta T6G 2G3, Canada.
    • ,
  • Gian S. Jhangri, MSc

      Affiliations

    • Department of Public Health Sciences, University of Alberta, Edmonton, Alberta, Canada

Accepted 17 March 2010. published online 27 August 2010.

Article Outline

Abstract 

Context

Living with chronic kidney disease (CKD) is associated with spiritual distress and frequently precipitates a search for meaning and hope; yet, very little is known about these patients’ spiritual needs.

Objectives

To describe the nature, prevalence, and predictors of spiritual and supportive care needs in CKD.

Methods

Prospective cohort study of 253 CKD patients who completed a seven-item spiritual and seven-item supportive care needs assessment.

Results

Patients reported a mean (standard deviation [SD]) number of 2.9 (2.6) spiritual needs, with 69.1% of patients reporting at least one spiritual need. The mean (SD) number of supportive care needs was 3.5 (2.1), with 91.4% of patients reporting at least one of these needs. Thirty-two percent of the patients had high spiritual needs (defined as reporting ≥5 of the seven needs). Similarly, 37% of the patients reported high supportive care needs. Neither spiritual nor supportive care needs were associated with age, gender, race, marital status, dialysis modality, time on dialysis, or comorbidity.

Conclusion

These patients had substantial spiritual and supportive care needs. There were no clear predictors of high spiritual or supportive care needs, highlighting the importance of evaluating all CKD patients for unmet needs. Health professionals will need to better understand and attend to CKD patients’ spiritual needs to optimize quality care.

Key Words: Chronic kidney disease, end of life, needs assessment, spirituality, supportive care

 

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Introduction 

Chronic kidney disease (CKD) is a life-altering disease associated with a substantial symptom burden and a compromised health-related quality of life (HRQL).1, 2, 3, 4 Living with CKD frequently precipitates a search for meaning and hope. This spiritual need often centers on patients’ uncertainty, vulnerability, hopelessness, fear, depression, anger, loss of roles and self-identify, and their fear of dying.5

Spirituality is that which gives a transcendent meaning to one’s life, illness, and death, and exists both within and outside of traditional religious systems.6, 7 Conversely, religion is more narrowly defined and may be viewed as participation in the institutionally sanctioned beliefs and activities of a particular faith group.8 It is the outward expression or practice of a particular spiritual understanding or the framework for systems of beliefs, values, codes of conduct, and rituals.9 It is now acknowledged that spirituality is central to the lives of many patients, especially in the contexts of debilitation, suffering, and dying, as it provides an interpretive framework for handling the challenges of their illness.6, 10 In fact, spirituality often influences the course of illness, treatment choices, relationships with loved ones, and overall HRQL.11 For patients with CKD, spiritual beliefs and practices appear to play a pivotal role in enhancing HRQL and psychosocial adjustment to illness.12, 13, 14, 15 Patients who do not have their spiritual concerns addressed often suffer deeply. The clinical implication is that if nephrologists want to provide comprehensive care and improve CKD patients’ HRQL, they need to pay more attention to their patients’ spiritual concerns.

Very little is known about spiritual and supportive care needs of patients with CKD. This study describes the nature, prevalence, and predictors of existential and supportive care needs in CKD. Identifying those patients who are most in need and the specific services and assistance most desired by these patients is the first step in designing patient-centered interventions aimed at decreasing spiritual suffering and improving overall quality of care.

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Methods 

This was a prospective cohort study of CKD patients from a Canadian university-affiliated renal program. Ethics approval was obtained from the University of Alberta Research Ethics Board. Patients aged 18 years or older, with CKD, receiving chronic dialysis or diagnosed with Stage 4 or 5 CKD, being cared for in a Renal Insufficiency Clinic, and cognitively able to complete the questionnaire in English, with or without the use of a translator, were eligible to participate. This involved the Home Dialysis Program (including peritoneal dialysis [PD] and home hemodialysis [HD] patients), in-center HD, and three rural satellite HD units. Patients were consecutively sampled as they presented to dialysis or predialysis clinics between March 2007 and September 2008.

A 14-item, self-report, needs assessment survey was adapted from a tool that was originally developed for cancer patients.16 The original 34 items represented supportive, existential, educational, and practical needs of patients with cancer. The tool does not address specific religious needs but, rather, was designed to address the broader existential dimensions of spirituality and, therefore, has a broad scope to encompass the diversity of needs of patients with diverse religious backgrounds and those with no religious affiliation. The adapted version (Appendix) used in this study incorporates two of the four constructs, existential and supportive care needs. However, two additional items from the original tool (dealing with pain and making plans in case patients become very ill) also were included, as they are relevant for patients with advanced CKD. Sociodemographic and medical characteristics also were recorded. The Charlson Comorbidity Index (CCI),17 which has been validated in CKD,18 was used to quantify comorbidity. A CCI score of 8 or more identifies dialysis patients who have approximately a 50% one-year mortality rate.19

After providing written informed consent, patients completed the self-report assessment, which took approximately five minutes. Patients were permitted to complete the survey while on dialysis, in clinic, or at home, returning the survey when they next presented for treatment. The project coordinator was available to help with the completion of the survey and to answer questions as they arose. Because the purpose of this study was descriptive, a formal sample size was not calculated.

SPSS 17.0 for Windows (SPSS Inc., Chicago, IL) was used to perform statistical analysis. P<0.05 was considered for statistically significant results. Patient demographic characteristics were described as percentages or as a mean (standard deviation [SD]). Responses to spiritual/existential needs and supportive needs were dichotomized (yes/no) as “yes” or “yes but not now” and “no” or “does not apply.” In Table 2, the elements were ranked based on the percentages of patients who rated each element as important. The percentages of yes responses were compared between sexes (male vs. female), between races (white vs. others), among marital statuses (never married vs. married vs. others), and among dialysis modalities (HD vs. predialysis vs. PD) using the Chi-squared test.

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Results 

Of 350 eligible patients, 243 patients (69.4%) consented and were assessed. Demographics did not differ between participating and nonparticipating patients. Patient characteristics can be seen in Table 1. Almost one-third of patients had not yet started dialysis. Comorbidity was high, with a mean (SD) CCI of 8.7 (2.9). The frequencies of reported spiritual and supportive care needs are outlined in Table 2. Each need was endorsed by 34.7%–65.3% of patients. Specifically, help with finding hope and making plans in case they became ill were the most highly endorsed spiritual and supportive care needs, respectively. The mean (SD) number of spiritual needs was 3.0 (2.6), with 69.1% of patients reporting at least one spiritual need. Similarly, the mean (SD) number of supportive care needs was 3.5 (2.1), with 91.4% of patients reporting at least one of these needs. Thirty-two percent of patients had high spiritual needs (defined as reporting five or more of the seven needs), and similarly, 37% of patients reported high supportive care needs.

Table 1. Demographic Characteristics (n=243)
Characteristics%
Gender
Male56.0

Race
White76.5

Marital status
Never married14.9
Married/common law63.5
Single (widowed/separated/divorced)21.6

Dialysis modality
HD59.3
Predialysis31.7
PD9.1

CharacteristicsMean (SD)
Age in years59.5 (14.7)
Months on dialysis (HD and PD only)31.5 (27.0)
CCI8.7 (2.9)
Table 2. Prevalence of Spiritual and Supportive Care Needs (n=243)
Type of Needs% Yes
Spiritual/existential needs
Finding hope52.9
Finding meaning in my life now50.2
Dying and deatha42.7
Finding peace of mind41.6
Overcoming my fears37.4
The meaning of life37.0
Finding spiritual resources34.7

Supportive needs
Making plans in case I become ill65.3
How to be in touch with other kidney failure patients57.6
Worries I have about my family53.5
Relaxation/stress management51.0
Sharing my thoughts and feelings with those close to me44.0
Learning to cope with feelings of sadness43.8
What I can do about pain36.6

aNine patients (3.7%) did not answer the question and were excluded from percentage calculation.

The number of spiritual or supportive care needs was not associated (results not shown) with age, gender, race, marital status, dialysis modality, time on dialysis, or comorbidity. However, women were more likely to require help with overcoming their fears compared with men (45% vs. 32%, P=0.034). HD patients were more likely than predialysis and PD patients to need help with finding peace of mind (47%, 38%, and 18%, respectively; P=0.026) and determining the meaning of life (43%, 30%, and 23%, respectively; P=0.053). There was a trend toward needing greater help dealing with pain for women compared with men (43% vs. 32%, P=0.068) and for HD patients compared with predialysis and PD patients (42%, 30%, and 23%, respectively; P=0.068).

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Discussion 

Physicians may question their role in probing patients’ spiritual concerns, thinking that such matters fall outside of their expertise. However, growing evidence that spirituality can significantly impact patients’ psychosocial adjustment to illness and the recognition that most patients want to have spiritual issues addressed by health care professionals has begun to change the cultural environment for health care in North America.20, 21, 22, 23, 24 A recent study revealed that most CKD patients (56.5%) felt that it was important that their spiritual concerns were attended to by nephrology staff and that they relied on their nephrologist (55.3%) and nursing staff (51.4%) for emotional support.25

Issues relating to the meaning and purpose of life have been found to be as or more important than physical symptoms and physical well-being, especially in the context of life-limiting illness.26 However, spiritual suffering is frequently ignored or dismissed.27 Spiritual suffering often manifests as physical or psychological problems and shares many features with depression, including feelings of hopelessness, worthlessness, and a sense of meaninglessness. Spiritual suffering also may exacerbate, and be exacerbated by, psychosocial disturbances and other physical symptoms, such as pain, confounding diagnostic and therapeutic strategies.28 The World Health Organization advocates for the early identification and assessment of spiritual problems,29 and accredited hospitals in the United States are now required to document a “spiritual assessment” of patients.30 A needs assessment is a direct method to identify the specific services and assistance most desired by patients and is a first step in designing needs-tailored interventions. This study is the first, to our knowledge, to describe spiritual and supportive care needs of patients with CKD.

These patients had substantial spiritual and supportive care needs. Specifically, more than 50% of patients reported wanting help with worries about their family, finding hope, relaxation/stress management, finding meaning in their life, making plans in case they became more ill, and getting in touch with other CKD patients. We were not able to identify clear predictors of which patients were more likely to have spiritual or supportive care needs, highlighting the importance of evaluating all CKD patients for unmet needs. The finding that most demographic variables had no bearing on spiritual needs is consistent with the literature for cancer patients, with the exception that female cancer patients may report a higher number of unmet spiritual needs than their male counterparts.31

The increasing attention to spiritual well-being in health care is, in part, a result of its association with health benefits, including psychosocial adjustment to illness and lower use of health services.32 Spirituality may affect health through many mechanisms, including an influence on health practices and treatment choices during the course of illness;11 the provision of social supports; and the ability to give meaning, hope, and comfort, even in situations of extreme suffering, by providing an explanation for the experience of illness and suffering.33 Regrettably, technological advances shifted the focus of medicine away from compassion and empathy. However, there is now a growing trend toward patient-centered care that once again stresses compassionate and empathetic caring for all patients. The Association of American Medical Colleges states that physicians must “… seek to understand the meaning of patients’ stories in the context of patients’ beliefs, family, and cultural values.”34

Despite the recognized importance of spiritual issues during serious illness, spiritual distress may not be recognized in a usual clinical encounter. Furthermore, clinicians struggle to initiate such discussions.11, 22, 35, 36 New guidelines for incorporating spirituality in end-of-life care, including spiritual assessment, have been published recently.37 Single questions, such as “Are you at peace?” 11 or “Do you have spiritual concerns you would like to discuss with a member of the health care team?” may serve as simple screening tools, providing a gateway for more in-depth spiritual assessment for those who indicate spiritual distress. Many U.S. medical schools are now conducting courses on spirituality to improve clinician knowledge, skills, and awareness.38

There are limitations to this study that should be noted. This is primarily a white population. The importance of cultural influences on spiritual needs in cancer and noncancer patients has been clearly acknowledged.39 However, this simple needs assessment tool has been used to assess ethnically diverse cancer patient populations and could be used in a similar fashion to assess more ethnically diverse groups of CKD patients to better understand how needs may vary in these patients. This survey was initially developed for cancer patients. Although the needs outlined in the survey were clearly relevant for study participants, additional needs also may be important, with these results underestimating spiritual and supportive needs of CKD patients. The reasons why 30% of the approached patients did not participate were not systematically studied. Although we cannot exclude the possibility of selection bias in participating patients, demographics did not differ between participating and nonparticipating patients, and we do not believe this has influenced our results. This study does not address the exact role physicians should have in assessing and managing patients’ spiritual concerns. Although not all physicians will feel comfortable with or have the skills necessary to explore spiritual issues with patients, they should be able to recognize and respect unmet needs that are causing significant distress, understand their impact in the clinical context, and make appropriate referrals to spiritual care providers if the patient wishes.

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Summary 

Insufficient attention has been given to spiritual and supportive care needs of patients living with CKD: chronically ill and dying patients who do not have their spiritual concerns addressed often suffer deeply. Our data demonstrate that CKD patients have unmet spiritual and supportive care needs that require the appropriate services to adequately manage the challenges of living with their illness. These data can be used to help guide interventions aimed at improving HRQL and quality care, including end-of-life care, for CKD patients. Such interventions will require health care professionals to better understand patients’ spiritual needs, resources, and preferences.

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Appendix. Patient Needs Assessment 

Not every item will apply to you. If the item does not apply to you now, please check the last column, “Does not apply.” All answers are confidential. Thank you for your time.

YesYes, But Not NowNoDoes Not Apply
I. I would like to learn more about:
1. How to be in touch with other kidney failure patients.
2. What I can do about pain.
3. Relaxation/stress management.

II. I would like help with:
4. Making plans in case I become very ill.
5. Learning to cope with feelings of sadness.
6. Sharing my thoughts and feelings with those close to me.
7. Finding spiritual resources.
8. Worries I have about my family.
9. Finding meaning in my life now.
10. Finding hope.
11. Overcoming my fears.

III. I would like to have someone to talk to about:
12. The meaning of life.
13. Dying and death.
14. Finding peace of mind.

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PII: S0885-3924(10)00496-3

doi:10.1016/j.jpainsymman.2010.03.015

Journal of Pain and Symptom Management
Volume 40, Issue 6 , Pages 838-843, December 2010

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