Doc, Don't Procrastinate…Rehabilitate, Palliate, and Advocate

In a recent dialysis meeting, one of our colleagues commented “there is so much more to living than just not dying.” On reflection, these are words that apply not only to the individual dialysis patients and their families, but also to us as health care providers. We often subconsciously direct treatments to fulfill our own expectations and treatment goals. It is highly likely that we overestimate the benefits of dialysis care and underestimate the burden to our patients. A recent study of patients who were residents in nursing homes at the time of dialysis initiation showed that dialysis initiation was associated with a 58% 1-year mortality rate and a rapid decline in functional independence.1 Perhaps even more strikingly, in a smaller single-center series, even individuals who were previously independent experienced a high rate of functional decline in the first few months after dialysis initiation.2 In this issue of the American Journal of Kidney Diseases, Thakar et al3 add another perspective to the burden of chronic illness carried by dialysis patients.4 They performed a retrospective observational study of all patients dependent on dialysis who were admitted to a single long-term care hospital (LTCH) and followed them through until their discharge. Their results were sobering, in that only 31% of patients were able to return home from the LTCH. In fact, patients were more likely to be discharged to a nursing home (40%) or to transfer back into an acute care hospital (24%) than to return home, suggesting a failure of holistic care.

Acute illness makes even healthy individuals feel lousy, albeit for a short period of time. Acute illness associated with hospitalization is naturally worse. Studies in the geriatric literature clearly show that even 1 hospitalization is predictive of subsequent functional decline and the future need for placement in a long-term care institution or nursing home.4, 5, 6 In the dialysis population, the associations are less well described; however, over the last 5 years there has been an explosion in the number of publications describing an unexpectedly high burden of disability, sensory impairment, and cognitive decline.7, 8, 9, 10, 11, 12, 13, 14, 15, 16 Hospitalizations, even when only for a few days, have been shown to be associated with deterioration in multiple aspects of daily living, strength, and cognitive function.17 Perhaps more striking is the observation that even 1 week after discharge, patients do not return to their previous levels of functioning.

In patients with chronic kidney disease, the assumption has long been that clearing the uremic toxins is beneficial and that, after the initial few dialysis sessions, patients should see an improvement in energy, reduction in symptom burden, and a return to more normal life. However, none of the data available support this belief. Previous reports dating as far back as 1994 suggest that most dialysis patients do not return to the same level of functioning as they previously had, while 2 recent publications examining patients aged 80 years or more and those residing in nursing homes actually suggest that patients experience an accelerated decline in functional status after dialysis initiation.1, 2, 18, 19

What then is the solution? Why are so many dialysis patients now residing in nursing homes? Why do so many patients admit to staying mostly inside their homes unless traveling to or from the dialysis units? Our personal experience in Toronto has been that active inpatient rehabilitation with integrated dialysis care is one possible solution. Active rehabilitation appears to be as effective in dialysis patients as in nondialysis patients. In our experience, over 70% of seniors return back to their private homes after completion of the rehabilitation program, with most continuing to enjoy more active lives for months to years afterwards.20 Why then did Thakar et al3 find LTCH outcomes to be so disappointing? LTCHs provide care to chronically ill, elderly, and disabled persons in an effort to promote independent living and offer rehabilitation services. Most aim to promote continuity of care between acute, pre- and post-acute, and continuing care in institutions, the community, and the home. However, it is unlikely that LTCH services integrate with dialysis services or vice versa and therein may lay the problem. Dialysis sessions at set times (rather than at varying times) are known to have better rehabilitation outcomes.21 Other factors such as short daily dialysis or staff cross-training may be helpful. Additionally, combined clinical and teaching rounds may lead to an appreciation of the other disciplines. Examples include the physiotherapist who notes increased respiratory rate during exercise and suggests increased ultrafiltration at the next dialysis session, or the pharmacist who notes that the pain medication required for the formal rehabilitation sessions is leading to mild drowsiness and may be exacerbating falls and unsteadiness in the immediate postdialysis period.

One alternative viewpoint is that patients with high premorbid functional and symptom burdens should be advised to not start dialysis but opt for a more conservative approach. Certainly, the evidence emerging from some UK centers supports the role of nondialysis care for kidney failure22, 23, 24; however, many nephrologists feel uncomfortable making such decisions and fear the medicolegal implications of doing so. Many feel insufficiently trained to either have such discussions or to provide medical and psychological care at the end of life.25, 26 Yet fewer programs have dedicated resources to manage the care of patients who have opted to not undergo dialysis, despite an appreciation that oftentimes not providing dialysis care is more resource intense than simply initiating dialysis therapy.27, 28 Therefore, an additional strategy is to develop programs within each medical care center to allow better discussion around palliative care and create better support systems for families and patients opting to go this route. Treatment planning should include all aspects of care for kidney failure without necessarily including routine dialysis sessions. Protocols and clinical pathways which focus on pain relief, and symptom management with erythropoietin, scopolamine, or fluids can be shared with patients and families, allowing them to feel involved and in control. The risk of hospitalization, the impact on day-to-day life, and commonly experienced symptoms should also be included as part of the education, ensuring all involved are aware of both the advantages and the burdens of treatment. In the final stages of life, families often find it reassuring to keep a symptom response kit at home. These kits may contain medications that are commonly used to manage symptoms. Families or visiting nurses can be instructed on how and when to use these medications to help ease the process of dying at home.

For patients and families who, despite a high comorbid or functional burden, wish to proceed with dialysis, it seems reasonable to offer a trial of dialysis with a specified duration, explicit end points, and clear expectations.29 In this respect, care of the vulnerable dialysis patient parallels care of the cancer patient. Survival rates are similar for kidney failure (end-stage renal disease) and many of the common types of cancers. The symptom burden in both diseases is high. In fact, the main difference is that cancer patients often have time–limited oncology treatments while patients with kidney failure are generally looking at a lifetime of treatment. Thus, a trial of therapy may allow a better understanding of the disease, the treatment itself, and the anticipated symptom burden before decisions around continuation or discontinuation are made. For the patient with kidney failure, a trial of dialysis may give the patient and family a sense that they are “fighting” the disease (akin to a trial of chemotherapy).30 It may help them understand what it is like to need to travel to and from dialysis 3 times weekly, how fluid shifts affect the sense of wellness, and what sort of dietary restrictions will be required. Compiling this experience allows patients to make an informed decision about their treatment in much the same way some patients chose to continue or to stop chemotherapy. Proactive discussions around the signs or symptoms of distress that would necessitate that the dialysis session be stopped early, or deferred, may lower the tension between health care staff and families and lead to a gradual acceptance that dialysis is futile. Such signs may include frequent low blood pressure requiring repositioning of the dialysis chair, pain, cramping, moaning, or discomfort which requires ongoing medication. Communication in such trials is key, as misunderstanding and miscommunication regarding prognosis may lead to overestimated expectations and a sense of disappointment.31 Patients and families need to understand that not having dialysis does not equate to not having care.29, 32, 33 It is a shift in care to prioritize management of different symptoms. To this effect, the oncology literature suggest patients, family members, and team members all be given a written plan which clearly documents prognosis, the goals of therapy, and the treatment options. Expecting patients to understand, or even to trust, that care is “futile” is unrealistic. The concept of futility is difficult to grasp, and particularly when a loved one is ill, it can be too much to ask of families. Ongoing open, honest communication with all team members giving the same message is crucial and allows families, and patients, to acknowledge and express their fears and concerns as well as their preferences.

To conclude, we welcome the shift within nephrology that is being seen in recent articles, including that by Thakar et al. Outcomes are no longer being equated to survival alone. Studies are now addressing quality of life, functionality, rehabilitation, and the question of whether patients die “good deaths” or “bad deaths.” We, as the nephrology team, have a responsibility to our patients to assist them with the best possible living, or if appropriate, the best possible death. Whether we like it or not, death is the only outcome that is guaranteed, regardless of what we do. What we need to learn is that it is not about the dying, it is about the living beforehand.