Last week I met with Fiona Spargo who is with the North West Dialysis Service (part of Royal Melbourne Hospital). She is working to establish a Conservative Care service for End Stage Renal Failure and dialysis patients. This is part of a world-wide trend, so watch out for it in your area.
Up until a couple of years ago, there seemed to be only two choices for those of us blessed with ESRF: dialysis or transplantation. But actually there is a third, the let-it-take-its-course option. That is, accepting our health will gradually worsen until we pass away.
Selection this third choice is by no means rare. Many patients of advanced age suffer from multiple problems and diseases, and treating their kidney disease will not improve their overall quality of life. Also, the health of patients who are on dialysis gradually worsens, eventually to a point when dialysis is no longer maintaining their quality of life. Finally, for some people, dialysis or a transplant is simply not for them.
As a result, a lot of work has been done around the world over the past few years on providing better support to people in the final stages of ESRF. What began as palliative care, which focussed on care during the dying process, has expanded into Conservative or Supportive Care, which focuses on enabling the best possible quality of life by relieving suffering, controlling symptoms, and restoring/maintaining functional capacity throughout the remaining years of a person’s life.
This means that Conservative Care regime begins as soon as the problem is identified, regardless of whether they choose dialysis or not. One dialysis unit, St Georges Hospital in Sydney, provides patients with a questionnaire that enables the unit to assess the quality of life of each patient every two years, and to arrange the appropriate additional care. See this presentation for more details.)
The questionnaire is interesting. It measures many of the things I just don’t talk about with my nephrologist, and don’t get the time with the nurses in the unit:
- Physical Functioning: limitations in all physical activities including bathing and dressing
- Life Role: problems with work or other daily activities
- Bodily Pain: limitations due to pain
- Vitality: levels of energy
- General Health: either poor or excellent
- Social Functioning: interference with normal social activities due to physical or emotional problems
- Emotional Functioning: limitations as a result of emotional problems
- Mental Health: ranges from feelings of nervousness and depression to feelings of happiness and calmness.
Obviously, the answers change over time, and maybe it would be useful to use this framework whenever we go into one of our health “dips” (eg when we feel weak and useless for more than a few days, or get a maddening itch that won’t go away). The result would be an additional Conservative Care intervention to help us back to health.
A typical Conservative Care clinic includes:
- Palliative/Conservative care physician
- Renal registrar (learning opportunity)
- Renal Clinical Nurse Consultant
- Social worker
This movement to Conservative Care began in the UK and has had significant success. See this paper for more details.
Why do we need Conservative Care? The St George study results say it all:
- Patients on dialysis are suffering a high symptom burden
- Symptom burden is reflected in the poor quality of life, physically and psychologically
- Physical and emotional parameters appear the most changeable over time.
Conservative Care targets all of these findings.
So, rather than Dialysis, Transplant or Conservative Care, the way forward is actually Dialysis, Transplant AND Conservative Care. Bring it on!