What do you mean my kidneys are failing?” “What is dialysis?” “Am I going to die?” “This can’t be happening to me.” “What about my family?” “I am afraid….” The diagnosis of kidney disease is a life-changing event for individuals and their families. Their entire world has just changed. They have lost their safe and secure view of their own sense of good health and well-being. Their sense of the future is not as certain. They are in crisis and grief. Crisis can be viewed as a critical event that requires people to develop new ways and acquire new skills to cope and manage a new normal. This new normal for a chronic kidney disease (CKD) patient requires many changes, including implementing a kidney-friendly diet and reorganizing time and plans to accommodate scheduled dialysis treatments.
The National Kidney Foundation (NKF) reports that 20% to 40% of people with kidney failure have depression, which may be related to a feeling of grief arising from a sense of loss (1). Kubler-Ross (2) described stages of grief and loss as denial, anger, bargaining, depression, and acceptance in her work On Death and Dying. For many individuals, these feelings do not fall into rigidly defined stages but are more like a “spiral of emotions,” which increases and decreases depending on other factors, such as physical distress, social support, role conflict, loss of employment and income, and increased financial costs.
How can the kidney health care team help? The NKF’s Living Well with Kidney Failure series notes how important it is for patients to be taught how to manage this new normal physically, mentally, and emotionally (1). This includes keeping track of laboratory results and working closely with their care team to set reachable goals. Critical steps in self-care management include taking medications as prescribed and managing any side effects. Many patients will need to make dietary changes to limit sodium, potassium, phosphorus, and fluid intake. Regular physical activity will help give energy and reduce stress. Managing stress helps patients improve both physical and emotional health. Remaining connected to family and friends and continuing to be involved with enjoyable activities are important. Individuals with kidney disease should be supported to seek mental health services when needed.
Family members and caregivers are often the silent heroes for individuals with kidney disease. It is not uncommon for other family members to take over important roles that the person with CKD can no longer perform. The roles assumed may include responsibility for employment and income issues, transportation, household tasks and activities, and caring for children or dependent adults. Life partners may also be depressed by the changes that kidney disease brings to their intimacy. All of these changes often create conflict and stress. Family caregivers may be reluctant to disclose how stressed they are feeling to avoid placing an additional burden on the patient. The caregiver may even feel guilty or that they do not have a right to care for themselves and their own issues. Caregivers are at risk for depression and “burn out” if they neglect their own physical, mental, and social needs.
How can the CKD care teams help with the needs of the patient and caregivers? What are the “best practices” for incorporating these topics into patient and family education? First, early diagnosis and referral for CKD education can help many individuals prepare for the eventual transition to life with dialysis. Second, some people are diagnosed late in the course of the disease and face dialysis with very little time to prepare. These individuals must learn to adapt quickly. Third, patients and families must continue to cope with the evolving and changing demands of CKD and its treatment (dialysis or transplant) for the rest of their lives. This includes learning new skills to manage as one’s physical condition changes and learning to cope with the ever-present emotional “ups and downs.”
The dialysis center is often viewed as the “second” home for the dialysis patient, with other patients and treatment staff seen as family. A meaningful and open relationship between patients and the CKD care team is important for successful self-management. Successful self-management can help patients cope with the physical and emotional aspects of dialysis and mitigate depression. The care team has an important role in educating and helping patients learn to cope. The book Facilitating Treatment Adherence: A Practitioner’s Guidebook suggests several steps to help patients and families cope (3):
Clearly introduce oneself and one’s role with CKD patients, explaining how you can help.
Explore patient’s worries, goals, and expectations; empathize.
Answer all patient questions.
Avoid medical jargon; avoid being too technical.
Discuss treatment pros, cons, and tradeoffs.
Ask for the patient’s suggestions and preferences and negotiate any disagreements.
Self-management is an important strategy to help CKD patients deal with the stress of treatment, including depression. Open and supportive communication and education between the individual with CKD and the care team are critical.
Meichenbaum D, Turk DC. Facilitating Treatment Adherence: A Practitioner’s Guidebook, New York, Plenum Press, 1987.