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The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
― Atul Gawande,
Selection Committee member for the Palliative Care and Nephrology Region:
Christian T. Sinclair, MD, FAAHPM
Dr. Sinclair is currently an Assistant Professor in the Division of Palliative Medicine at the University of Kansas Medical Center. He has clinical experience with all of the different venues of hospice and palliative care through his past work with Kansas City Hospice and Palliative Care, in addition to his past leadership roles as a fellowship director, and National Hospice Medical Director with Gentiva. His early rise in the field of palliative medicine was due to his writing for the website Pallimed. He served six years on the board of the American Academy of Hospice and Palliative Medicine and is the current president of the American Academy of Hospice and Palliative Medicine.
Meet the Competitors for the Palliative Care and Nephrology Region
Conservative Care in ESRD vs Stopping Dialysis
This matchup gets to the core of what medicine is all about. It’s not about the stats. It’s not about the accolades. It’s about the emotions. These two teams face off with coaches that have very different approaches. Conservative Care in ESRD prefers slow and steady to win the race, whereas Stopping Dialysis says “let’s take a shot no matter the odds, and if we don’t do well, at least we tried.” The players and their fans sometimes doubt if the team made the right decision, but as long as their coach is able to support them, they believe they can succeed in this tournament, even if the prognosis isn’t very good.
Conservative Care in ESRD
The venerable dialysis machine, an amazing mechanical replication of a biological organ, has been indispensible in helping people with kidney disease. Discovering a new perspective is challenging when the very tool you have spent years learning how to use, may not always be the best choice for your patient. This trend towards maximal conservative care of ESRD began nearly 15 years ago as physicians and patients began to ask if hemodialysis is always the answer in CKD stage 5.
Patients who decline dialysis can still benefit from specialty nephrology care in conjunction with a primary care doctor. Among all types of renal status (ESRD not on HD, ESRD on HD, and transplant recipients) the symptom burden is known to be significant, including number of symptoms and severity. Symptom control, correction of fluid balance, acidosis, electrolyte balance, and anemia are still important tasks to be managed by a nephrologist even without renal replacement therapy. The Renal Physician Association has a document online that recommends shared decision making and one of the recommendations is to forgo dialysis if initiating or continuing dialysis is deemed to be harmful, of no benefit, or merely prolongs the dying process.
But without dialysis, can this team even perform? Despite the correction of uremia with hemodialysis, functional impairment is still common after initiation of dialysis, and in some older populations function may decline more rapidly. It is shocking when you compare to those managed conservatively in one study which showed relative preservation of functional status until the last month of life in patients.
But wait! Can this team go deep? You might die sooner if you don’t get on dialysis for your CKD stage 5, right? Well the prognostic studies are limited, but the survival may surprise you. Over 13 studies in elderly patients choosing conservative (non-dialysis) management of late stage CKD, the median survival was at least 6 months, with some studies ranging up to 24 months. And once you take into account the multiple comorbidities, the survival advantage for dialysis may not add that much more time compared to conservative care, when it comes to patient of advanced age.
Without more head-to-head studies on dialysis versus conservative care specifically looking at quality of life and impact on mortality, this decision will never be a slam dunk. But there is enough here to call a time-out and think about what play to run in the final seconds of the game.
If a major organ is failing despite implementing lifestyle modifications and adhering to all of your medications, you may jump at the chance to replace that organ. Especially when the grim spectre of death seems close without some way to replace your organ function. Without ready access to kidney transplants, dialysis is an incredible organ replacement tool that many people have used to live longer and better.
When faced with a high risk decision, many people will choose the more active choice, and in the case of CKD stage 5 that would be dialysis. Given the historical scarcity of dialysis and concerns over access, which led to the 1972 ESRD amendment, it took nearly 15 years before the medical community began to debate the ethics of discontinuing dialysis. In more recent studies of ESRD populations, progressive renal failure after withdrawal of dialysis is one of the leading causes of death.
The reasons for stopping dialysis can vary, but it is important for the nephrologist to be skilled in having these important discussions. When handling these difficult situations, the nephrology team needs to value the ethical principles of autonomy and self-determination and patient’s right to refuse treatment. Ultimately, shared decision-making between physician and patient (or proxy if unable to participate) guides the decision to stop dialysis. This process is greatly aided with ongoing advance care planning from early in the disease course.
Estimating prognosis after dialysis discontinuation combines the clinical experience of the nephrologist and the few studies that show most patients die within two weeks after dialysis is discontinued. The presence or absence of other co-morbidities, and the withdrawal of other life-support measures may alter the prognosis.
Throughout the process it is important for the nephrologist to maintain the relationship with the patient to avoid concerns of abandonment. Discussion of a symptom control plan and hospice support are also important for the patient and the family. Communication skills become essential to allow this to blossom.
Ultimately the decision to start dialysis can be challenging, but the decision to stop can be one of the most difficult choices for any patient with end-stage kidney disease. Regardless of what they choose, it is still important for them to know that you are on their team.
Palliative Care Consultation vs Primary Palliative Care
A classic struggle emerges in this exciting matchup of newcomers to NephMadness. One proverb seems to favor Team Palliative Care Consultation—if you want to go fast, go alone, if you want to go far, go together. But other maxims may favor Team Primary Palliative Care—too many cooks spoil the broth; if you want something done right, do it yourself. Thankfully, we have you to help us figure out who will emerge from this head-to-head battle. Either way patients win with improved quality of life, aligned goals of care, and a quality relationship with a clinician.
Palliative Care Consultation
Palliative care became an ABMS recognized specialty in 2008, so Palliative Care Consultation is still a young team. Since this team is maturing and growing, the true impact on the NephMadness court is yet to be seen. Early signs indicate these young start-ups bring unique strategies and tools to impact patient quality of life, even in renal disease. The Choosing Wisely campaign identified that the current model of dialysis care for people with ESRD does not always provide high-value care. Could earlier involvement of palliative care consultation help achieve high-value care?
Palliative Care Consultation emphasizes the team approach, often staffed with a physician, nurse, social worker, and possibly a chaplain at key positions. The team works closely together to assess the whole person, making sure to include the family and clinicians in the process. In addition to expert symptom control, palliative care teams can assist with advance care planning, shared decision making, advocating for the patient and family in a fragmented healthcare system, and generally being an extra layer of support.
Nephrology teams experience with palliative care consultations may be limited to being co-consultants on hospitalized patients with non-renal primary diseases like cancer, multi-system organ failure, trauma, or neurologic devastation. This limited exposure may reinforce the very narrow view that palliative care consultation is only for crisis management and end-of-life care. Just because palliative care is involved, it does not mean that goals change to comfort care. Team PCC can see patients regardless of their goals of care.
Thankfully, inpatient care is only one arena for collaboration with palliative care. The growth of palliative care consultation in outpatient and home settings present new upstream opportunities for palliative care teams and nephrologists to co-manage care for patients with late stage CKD. And with estimated nephrology workforce shortages, the focus on delegation and cooperation becomes more important.
It is time for Team Palliative Care Consultation to not just play with Team Cancer, Team Pulmonary, or Team Heart Failure. If Team PCC can go far in NephMadness, it may signal a new era in a collaborative championship with nephrology.
Primary Palliative Care
Caring for people with serious renal disease is a complex and challenging endeavour that already requires a team approach. Between nephrology offices, free-standing dialysis centers, primary care physicians, and hospitals, there are many people already involved, so adding one more group may be more trouble that it is worth. Especially if Team Palliative Care Consultation is stuck in the hospital or not even travelling to your town.
Thankfully, there is an even newer team making a debut, Team Primary Palliative Care. Primary palliative care (aka Generalist Palliative Care) is the application of a basic skill set of symptom assessment, communication, and advance care planning by the clinicians already involved in the care of the patient. In this tournament, Team Primary Palliative Care is led by a nephrologist who recognizes quality of life and symptom control can be as important as calculating glomerular filtration rates or adjusting doses for renal impairment. This nephrologist even may take a special interest in improving their communication skills to better address the challenging conversations her patients expect her to initiate. With practice these discussions can become more natural and efficient, so the clinic schedule stays on time!
Primary palliative care helps ensure that all patients with serious illness have advance care planning led by the clinicians who have been working with them the longest. This role can be provided by the social worker at the dialysis clinic or a nurse in a nephrology office under the direction of the nephrologist. The biggest challenge for this primary palliative care is making sure nephrology fellows (and attendings) are getting the necessary education to provide it. Right now, that isn’t happening.
Yet there is hope! Nephrologists and patients form a long relationship based on trust and continuity. For a majority of patients with ESRD, good quality of life may be achieved by the nephrology team applying Primary Palliative Care skills, but only if there is an opportunity to learn those skills. In the end a new leader may emerge: the palliative nephrologist! Go Palliative!
– Post written and edited by Drs. Christian Sinclair, Kenar Jhaveri, Matthew A. Sparks and Joel Topf.