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Answers From Our Expert: Quality of Life

Q: My father is considering ending dialysis treatment. What should we do to help him? What are the legalities? Is a hospital stay the best route? Hospice? Please help...

A: From my social work background, I always think it is important to start by trying to understand exactly what is leading a person—your father in this case—to consider stopping dialysis. These are a few of the questions I consider:

  1. Is this decision based on worsening physical health, is the physical condition treatable, and how burdensome are the treatments compared to the benefits?
  2. Is the decision based on problems related to dialysis and are these correctable using the same treatment option or might another treatment option be better?
  3. Is hopelessness or depression contributing to a patient's desire to stop dialysis and if so, what things does the person have to live for?
  4. Does the person and family understand the process of dying from kidney disease and what the specific care needs will be (medications, diet, fluid restriction, etc.)?
  5. Does the patient and family know what resources are available and how to access them?
  6. Is the decision to stop dialysis a firm one?
  7. Does the patient and family understand that it may be possible to return to dialysis if the patient changes his/her mind?

If your father feels hopeless because he believes his health is deteriorating and nothing can change this, I'd suggest that you talk with his doctor to find out if his perception is true. If the doctor disagrees, he might review your father's lab report and medications to make sure that dialysis is working as well as possible and that the treatment and medicines that he is taking (prescribed and over-the-counter) are appropriate.

If his dialysis treatment is painful or makes him feel worse, he might talk with the nurses and change how dialysis is done or talk with his doctor about other treatment options. If your father is weak, his doctor could refer him to a physical therapist and ask the dietitian to talk with him about his nutrition. If he is depressed, the doctor might prescribe antidepressant medicines and the social worker could counsel with him or refer him to a counselor in the community. If the healthcare team believes that he could improve, your father may become more hopeful, may begin to look at things more positively, and start to get stronger and feel able to do more things that he previously enjoyed.

On the other hand, your father's doctor may confirm that your father's health IS getting worse, will continue to do so, and nothing anyone can do can stop the decline. If so, your father may be thinking that he wants to choose when and how he will die on his own terms. Although it may be difficult for family members to allow him to make this decision, he has the legal right to choose to stop dialysis and to receive care and support during the dying process. Although some people want to die in a hospital, most seem to want to die at home, in their own bed, surrounded by family and friends without the noise and activity that is always present in a hospital. I'd suggest that you look at your father's health insurance policy to find out what is covered for end-of-life care (sometimes called "palliative care").

Here are some resources that you may find helpful:

  1. The National Kidney Foundation has a wealth of information on kidney disease, including a booklet on advance directives that can be found on the NKF website in their A to Z Guide.
  2. The Partnership for Caring offers information in video and print formats to answer questions that you, your father, and your family may have about a variety of topics. I'd suggest you look at "It's All About Talking" (includes a booklet "Talking About Your Choices"), "Toolkits"—Family and Consumer Resource Guide (describes and links to materials and organizations), and Advance Directives (provide some basic information on your father and download forms that are legal in his state).
  3. The Hospice Foundation of America offers information about hospice care, questions to ask when interviewing a hospice agency, a link to a searchable database of hospice agencies, and educational materials about planning for death, grief, etc.

I hope that this information helps you, your father, and your family make this important decision.

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