An Untraveled Road: The Integration of Palliative Care with Nephrology

Throughout my nephrology training, and my career as a nephrologist in private practice, I naturally became curious about the emotional experience of my dialysis patients. As a renal attending I would visit my patients regularly, ask them how they were feeling, check in on their anemia and electrolytes and politely inquire about their life as a whole. This became a comfortable routine for me. Discussions of diet and working accesses certainly filled the time for a proper visit of a dialysis patient. One day I was rounding on a dialysis patient who was hospitalized for an upper respiratory infection. She was about to be discharged and was feeling well. I entered the room thinking this would be a quick visit. After asking the patient how she was feeling, she began to open up to me about what it was like to be on dialysis three times a week—she described it as “tiring” and “life changing.” She spoke of her relationships with other patients and how she dealt with a chair previously occupied by her friend, who now all of a sudden no longer came to dialysis. I sat and listened, thanked her for opening up to me, but felt helpless in offering her guidance and solutions for her physical symptoms as well as for her emotional distress. I knew I could write her dialysis orders, but I felt there was so much more I should be able to offer her as her nephrologist.

I often question the sources of my professional development. I am of course driven by the need to master knowledge and to competently treat patients with kidney disease. What took me by surprise was the emergent complexity of my emotional response to patient care. Was I able to provide comprehensive care for my patients if I didn't feel properly equipped to answer so many questions concerning their symptoms and their emotional experience with chronic illness? In my training I had learned the indications for life-saving renal replacement therapies and transplantation, but I also became familiar with the limits of medicine's capacities. As I developed as a clinician I increasingly felt conflicted over the rescue of life through dialysis and the resulting high symptom burden of so many frail and elderly renal patients.

The mastering of one subspecialty, nephrology, brought me to the threshold of another, palliative care. After three years, I left private practice and entered a palliative care fellowship. Knowledge and awareness of a new skill set fueled my curiosity. In the midst of my second fellowship I established contacts with the several notable clinicians around the world who are practicing renal supportive care. With a warm invitation from Professor Mark Brown, head of nephrology at St. George Hospital in Sydney, Australia, I boarded a plane to Sydney in search of specific clinical knowledge of renal supportive care.

Upon my arrival in Sydney I found that I had not only traveled to a new country, but also to a new model of palliative care delivery. In Sydney I saw a practice of nephrology that comprehensively incorporated supportive care. I began questioning the orthodoxy of my training thus far. I delved into studies that were currently being researched around the world. What drives treatment decision making for patients with kidney disease? What is the most effective way to deliver palliative care to patients suffering from kidney disease? How do I best manage the symptoms of dialysis patients? How do I truly integrate my two subspecialties in a way that impacts patient care?

In Sydney, the answer to many of these questions were found in patients whose care I was privileged to observe. On my second day with the renal supportive team in Australia, I met RS, a 78-year-old male with CAD, CHF, questionable analgesic nephropathy, and CKD that had progressed to ESRD, requiring hemodialysis for the past three years. Unfortunately, the week I arrived, RS's heart disease had worsened, and he was no longer able to tolerate his dialysis treatments due to persistent hypotension. RS felt that his quality of life was dramatically decreasing. Together with his nephrologist, RS was considering discontinuing dialysis. The renal supportive care team met with him and his family in the dialysis center, a place familiar to the patient and family. Having cared for RS's symptoms through his time on dialysis in a dedicated renal supportive care clinic, the renal supportive care team with their strong knowledge of both kidney disease and palliative care helped RS articulate his goal of comfort and allowed him to understand that he is still a fighter, but that his battlefield has now changed.

With a natural continuity of care, RS was admitted to a hospice facility in Sydney, where the same renal supportive care team managed his complex end-of-life symptoms skillfully and helped RS win his battle for a peaceful, painless, and dignified death surrounded by family. All care was done in close communication with his nephrologist. I was impressed by the natural flow of RS's treatment, which to me perfectly merged nephrology and palliative care. RS had been guided through a discussion that both honored the life-continuing effects of dialysis treatment and allowed the patient to comprehend his resulting quality of life, and all under the auspices of a renal clinical service.

As medical practitioners, we are taught to challenge decisions and to embrace education as a limitless journey to new answers. Typically, however, this journey is restricted to well-trodden tracks. The conflict that I initially felt as a renal fellow caring for seriously ill patients whose dialysis seemed often to extend rather than alleviate emotional and physical suffering led me to question the parameters of nephrology as a subspecialty, and to travel beyond them. There is still not a clear transition point demarcating where nephrology naturally flows into palliative care. However, a willingness to recognize novel approaches to care through global partnerships and integration of palliative care brings nephrology as a practice down a road untraveled, one where the patient's voice speaks loudest.