Renal Supportive Care

20 Nov

What if dialysis does not feel like the right thing for you?

Atul Gawande is an American surgeon who writes on the philosophy on healthcare. One of my students gave me his book “Being Mortal: Medicine and What Matters in the End”. In it, he describes his experience as a support person of his father living with terminal cancer. The book highlights choices that one makes, choosing therapies that feel right for them. Dr Gawande came up with questions that I use to help guide people in making the choice between dialysis or no dialysis. These are:

· What are your goals and priorities?

· What outcomes are unacceptable to you?

· What would a good day look like?

I like these questions because they help frame what is important to oneself, and what they are willing to undergo in order to get there. It also considers the flip side – what things they are not willing to endure. It also allows us to explore together how our choices will impact their lives – for better and worse.

There is growing recognition that dialysis does not always improve survival. For someone between 70 and 74, life expectancy is around four years on dialysis. To put this in perspective, this is similar to someone with metastatic bowel cancer. Further, as we pick up ailments throughout our lifetimes, we become less robust – our bodies have supported us through many events in our lives. We know that these people don’t gain as much survival benefit on dialysis.

In addition, dialysis may make us feel more unwell. This is because dialysis is an intensive process. It requires much time seeing doctors, nurses and undergoing procedures. For example, time commitment for our haemodialysis patients is usually around 12-15 hours a week – like a part time job. On top of this, we know our dialysis patients are still likely to feel washed out, have low appetite, trouble sleeping, and endure pain. Further time needs to be spent on those who experience dialysis complications.

So if dialysis may not lengthen one’s life or alleviate symptoms, many people opt for renal supportive care instead. This is a personalised, holistic way of helping people with kidney disease manage their symptoms and improve their quality of life. It involves the patient, their family / support network, as well as a team of healthcare workers including their kidney specialist, nurses, social worker and dietitian.

Renal supportive care can help with:

· Symptom management – Kidney failure can cause symptoms which may be treatable. See below

· Psychosocial support – As much as we would like our bodies to go on forever, we know that they don’t. It is normal for someone and their loved ones feel a sense of loss. We are able to provide support one through this process

· Advance care planning: This is a process of discussing someone’s values, beliefs and preferences and what this means for what medical care they will accept. Being explicit about this is important for good planning.

Some common symptoms that my renal supportive care patients experience are:

· Itch – This is usually worse at night or in hot or cold weather. Often this is due to dry skin. One of my mentors used to suggest a pH balanced bodywash (eg Hamilton’s) and apply moisturiser when the skin is still wet. Other emollients to try are menthol creams (eg Deep Heat) or capsaicin cream. There is some evidence that evening primrose oil capsules may be helpful. See your specialist for further prescription medications

· Restless legs – This is a crawling sensation in legs that is relieved by movement. This often accompanies itch, and also usually worse at night. It is not clear why this occurs. Exercise, decreasing caffeine and nicotine use has been shown to help. Iron replacement may also be of benefit. There are also precriptions that may help.

· Fatigue – This occurs in more than 70% of patients. This may be multifactorial in nature – not just due to kidney failure. We can correct low blood counts (anaemia), think of ways to conserve their energy, keep active within abilities, manage sleep, and improve nutrition and mood

· Pain – This is usually not directly due to kidney disease. Many pain medications can build up in kidney failure, so we need to be careful.

Whether or not someone chooses dialysis or renal supportive care, we look after our patients to the best of our ability. Renal supportive care offers freedom from the intensity of dialysis, for the purpose of maximising quality of life.

Renal Supportive Care

Medications and the kidneys