Abstract
Supportive care plays a key role in management of patients with chronic kidney disease. Patients with end-stage renal disease have a mortality risk and symptom burden higher than hospitalized cancer patients. An ethically informed nephrology practice will incorporate routine advance care planning, heightened recognition and management of symptoms, shared decision-making, and awareness of patient end-of-life care preferences.
Keywords
advanced care planning, conservative care, end of life, goals of care, good death, hospice, pain, palliative care, palliative dialysis, pruritus, shared decision making, supportive care, symptoms, time-limited trials, withdrawal from dialysis
Outline
Ethical Principles, 297
Medical Ethics in Nephrology, 297
Estimating Prognosis, 298
Advance Care Planning, 298
Shared Decision-Making, 299
If Appropriate, Forgo (Withhold Initiation or Withdraw Ongoing) Dialysis for Patients with AKI, CKD, or ESRD in Certain, Well-Defined Situations., 299
Consider Forgoing Dialysis for AKI, CKD, or ESRD Patients Who Have a Very Poor Prognosis or for Whom Dialysis Cannot be Provided Safely, 299
Conflict Resolution, 299
Providing Supportive (Palliative) Care, 301
End-of-Life Care, 302
Doctor–Patient/Family Communication, 304
Symptom Assessment and Treatment, 304
Summary, 304
“The moral unity to be expected in different ages is not a unity of standard, or of acts, but a unity of tendency. … At one time the benevolent affections embrace merely the family, soon the circle expanding includes first a class, then a nation, then a coalition of nations, then all humanity, and finally, its influence is felt in the dealings of man with the animal world.”
Ethical Principles
Medical ethics derive from the basic concept of human ethics. The word ethics is derived from the Greek word ethos , meaning “custom.” Accordingly, medical ethics are a set of changeable principles for what is considered “good, right or wrong behavior”.
Ethics addresses the fundamental question, “How should I live my life?”
Ethics are based on accepted standards of behavior. For example, in virtually all societies and cultures, it is wrong to kill or steal property from someone. These standards have developed over time and have been memorialized in religious, philosophical, and legal thought.
Moral standards are based on emotions and reason and lead to altruism. Altruism is likely a genetically based drive developed through evolution. For example, when a hunter/gatherer kills or gathers a large amount of food, that person will share it with the group rather than waste the food. Over time there was an evolutionary advantage to this behavior.
Bioethics speak to how we, as medical personnel, treat our patients. In Western (and increasingly global) society, the accepted principles are autonomy, justice, beneficence, and nonmaleficence ( Boxes 20.1 and 20.2 ).
- 1.
Respect for autonomy: The patient has the right to refuse or choose their treatment (voluntas aegroti suprema lex).
- 2.
Beneficence: A practitioner should act in the best interest of the patient (salus aegroti suprema lex).
- 3.
Nonmaleficence: “First, do no harm” (primum non nocere).
- 4.
Justice: Concerns the distribution of scarce health resources and the decision of who gets what treatment (fairness and equality).
- 5.
Respect for persons: The patient (and the person treating the patient) has the right to be treated with dignity.
- 6.
Truthfulness and honesty: The concept of informed consent.
- 1.
What are the ethical questions?
- 2.
What are the clinically relevant facts?
- 3.
What are the values at stake?
- 4.
List options. What could you do?
- 5.
What should you do? Choose the best option from the ethical point of view.
- 6.
Justify your choice. Refer back to the values and give reasons why some values are more important in this case than others.
- 7.
How could this ethical issue have been prevented? Would any policies/guidelines/practices be useful in changing any problems with the system?
Autonomy, especially in the United States, is a core value. But even this principle is strained when the question of euthanasia or physician-assisted suicide/dying is discussed. Interestingly, preservation of life at all costs is not a principle of medical ethics, so there are no medical ethical issues raised by these death-hastening practices. Withholding or withdrawing dialysis can similarly be viewed in this context.
Medical Ethics in Nephrology
The renal replacement therapy of dialysis is one of the first life-sustaining treatments and since its inception, nephrology has had to consider the ethics of withdrawing or withholding life support. The dilemmas that early nephrologists had to deal with are discussed in depth by Blagg in his 1999 article about the Seattle “selection committee.”
After dialysis became more universally available in the United States, ethical dilemmas shifted from justice (who will get a scarce resource?) to nonmaleficence (who will be more likely to be harmed than to benefit?). The Clinical Practice Guideline “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis” (The Guidelines) were the first comprehensive attempt to provide an ethics-based guideline for nephrology’s difficult decisions. We will refer to the guidelines where we mention “Recommendations.”
In the second edition of the Guidelines (2010), the authors state: “Ethical decisions should be analyzed by means of four topics: medical indications, patient preferences, quality of life (QoL), and contextual features (i.e., the social, economic, legal, and administrative context in which the decision occurs). Every case can be viewed in terms of these four topics; no case can be adequately discussed without reference to them” (see Box 20.2 ).
A recent Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference, Supportive Care in Chronic Kidney Disease: Developing a Roadmap to Improving Quality Care, endorsed the Guidelines and expanded them globally.
Estimating Prognosis
Although all patients with a potentially life-threatening disease should engage in advance care planning (ACP), it is helpful for programs to prioritize these discussions for patients with a poor prognosis. Estimating prognosis for a 6- to 12-month time frame has been studied as a way to facilitate ACP. We systematically discuss goals of care and completing advanced directives such as Physician Orders for Life-Sustaining Treatment (POLST) with the top quintile 6-month mortality risk of our population. We use a clinically useful tool to identify high-risk hemodialysis patients with limited prognoses. The tool was validated in the dialysis population, and a mobile app is available ( https://qxmd.com/calculate/calculator_135/6-month-mortality-on-hd ).
Estimating prognosis is not meant to predict the future for any given patient. Instead, it is used to identify patients who are at high risk for early death, and more importantly for frequent and extended hospitalization with often-unnecessary invasive procedures. Although a patient may not want to know a “number” in terms of risk for early death, studies have shown that they do want to be told their “prognosis.” Often, that means an honest explanation by the doctor of what the patient is likely to experience in the near future in terms of medical complications ( Box 20.3 ).
- •
For ESRD patients, estimate prognosis based on patient’s age, functional status, medical condition, including comorbidity and recent sentinel events, and the “surprise” question. The website http://touchcalc.com/calculators/sq provides a calculator for use of the surprise question response and other variables to estimate prognosis in dialysis patients. The same degree of precision does not exist for tools that estimate prognosis for patients with AKI.
- •
Present the prognosis in a manner that is considerate of the patient’s emotional condition. Balance the patient’s desire for QoL and length of life and provide reassurance that the physician has kept the patient’s best interest in mind. With the patient’s permission, strongly encourage the patient’s legal agent/family to participate in the discussion of prognosis and treatment options. See Recommendation 10 for suggested approaches to discussing prognosis, treatment options, and goals of care with AKI, CKD, and ESRD patients.
- •
Identify the patient’s wishes and goals for treatment at the onset of dialysis and again after any irreversible change in medical condition.
- •
For ESRD patients, reassess and communicate prognosis on at least an annual basis, and more often as indicated by any major change in status.
- •
For CKD and ESRD patients, during each annual Comprehensive Assessment and Plan of Care discussion, communicate appropriate options based on the patient’s condition, prognosis, and goals for care. Regardless of choice, palliative care should be offered for pain and symptom management and advance care planning. Hospice referral is appropriate for ESRD patients stopping dialysis.
- •
Provide recommendation to withhold/stop dialysis in patients who are not likely to benefit.
- •
If conflicts arise in shared decision making, consider palliative care or ethics consultation (see Recommendation 8).
Advance Care Planning
ACP has progressed since the days when dialysis and do not resuscitate (DNR) orders were felt to be incompatible and withdrawal from dialysis was considered suicide. ACP is now a condition of coverage in dialysis facilities. POLST, also known as Medical Orders for Life-Sustaining Therapy (MOLST), or its equivalent form, is legal in all but one state (polst.org/programs-in-your-state/).
Normalizing and starting these discussions early in the disease process is considered a key part of the comprehensive clinical management of patients with CKD. Staff members in dialysis facilities experience time restrictions, and the most pragmatic approach to initiating such conversations entails taking advantage of the team approach. For example, the Patient-Centered Outcomes Research Institute (PCORI) sponsored a study at Baystate Medical Center and the University of New Mexico Medical Center to assess how dialysis social workers and nephrologists can be trained to collaboratively deliver ACP.
Shared Decision-Making
Shared decision-making is recognized as the preferred approach to medical management. It involves the patient and their family/loved ones/legal healthcare proxy. The patient (or their proxy if they lack decision-making capacity) first must be engaged to share their values, goals, and the things that are important to them ( Fig. 20.1 ). They also need to determine who they want involved in their care and in decision-making. In some cultures, the patient will defer the decisions and discussion to a family member ( Boxes 20.4 and 20.5 ).
- •
Identify provider(s) who will coordinate communication with the patient or legal agent and family (e.g., nephrologist in conjunction with the primary care provider for ESRD patients or intensivists for AKI).
- •
Assess patient decision-making capacity and whether it is diminished by major depression, encephalopathy, or other disorder (see Tool 4 in Section 9: Tool Kit for helpful instruments). Obtain psychiatric and/or neurological consultation as appropriate, and institute treatment for conditions impairing decision-making capacity.
- •
Communicate diagnosis to patient (or legal agent) and family (if the patient agrees).
- •
Discuss prognosis based on patient’s medical condition, comorbidities, functional status, and age (see Tools 6-1–6-3 in Section 9: Tool Kit for tools for assessing functional status and quality of life, and estimating prognosis).
- •
Identify the patient’s wishes.
- •
Communicate options, taking advantage of educational resources such as other patients or videotapes and brochures.
- •
If the patient wants to forgo dialysis, determine why.
- ○
Are the patient’s perceptions about dialysis accurate? Does the patient know what to expect if dialysis is not started or is discontinued?
- ○
Does the patient really mean what he or she says or is the decision to refuse or stop dialysis made to get attention, help, or control?
- ○
Are there changes that might improve quality of life and would the patient be willing to start or continue dialysis while the factors responsible for the patient’s request are addressed?
- ○
Are there persons (e.g., social worker, chaplain) with whom the patient would be willing to discuss the decision?
- ○
(Also, see Tool 8-2 in Section 9: Tool Kit for NKF checklist on withdrawing dialysis.)
- •
Reach decision based on medical indications and patient’s preferences.
- •
Encourage patient to discuss end-of-life issues with others such as family, friends, or spiritual advisors (see Tool 5-1 in Section 9: Tool Kit for helpful questions to use).
- •
Refer for palliative care and hospice as appropriate.
- •
Assess decision-making capacity (see Tool 4-1 in Section 9: Tool Kit).
- •
Include ACP in the Comprehensive Assessment and Plan of Care for each individual patient.
- •
Inform dialysis patient of his or her right to complete an advance directive and of the dialysis facility’s policy with regard to advance directives as required by the 2008 Conditions for Coverage.
- •
Encourage patient-centered ACP among patients and families; raise the issue of ACP with each patient at the initiation of dialysis (earlier is preferred) and on at least a yearly basis. Hospitalizations and/or significant changes in medical, physical, or functional status should prompt reconsideration of ACP.
- •
Discuss ACP by asking:
- ○
If you become unable to make decisions for yourself, whom do you want to make decisions for you?
- ○
If you had to choose between being kept alive as long as possible regardless of personal suffering or living a shorter time to avoid suffering, which would you choose?
- ○
Under what circumstances, if any, would you want to stop dialysis?
- ○
If your heart stops beating or you stop breathing, would you want to allow a natural death?
- ○
Under what circumstances, if any, would you not want to be kept alive with medical means such as cardiopulmonary resuscitation, a feeding tube, or mechanical ventilation?
- ○
Where do you prefer to die and who do you wish to be with you when you die?
- ○
- •
Determine whether the patient has an appointed legal agent through a written advance directive.
- •
If the patient lacks decision-making capacity and has not completed an advance directive, arrange for or initiate the process for appointing a surrogate according to state law.
- •
Encourage patients to be specific about their preferences with legal agent, family, friends, and providers.
- •
Document provider’s discussion and understanding of patient’s preferences, show the patient the documentation, and offer to assist the patient in documenting the patient’s agreement or modification of the documentation. Where available, complete a Physician Orders for Life-Sustaining Treatment (POLST) or similar form to translate patients’ wishes into medical orders (see www.polst.org ).
- •
Place a copy of advance directives, DNR order card, and/or POLST form in multiple medical records as appropriate, including dialysis facility, commonly attended clinics, hospital, nursing home, and home.
- •
Encourage the patient, family, and/or legal agent to carry a current copy of the patient’s advance directive, DNR order card, and/or POLST form whenever traveling or being admitted for overnight medical care.
In the field of nephrology, shared decision-making is especially complex because of the option for life-sustaining therapy with dialysis in ESRD and acute kidney injury (AKI). The Guidelines make clear that not all patients should receive dialysis when they reach ESRD or when they have AKI: Recommendation 5.
If Appropriate, Forgo (Withhold Initiation or Withdraw Ongoing) Dialysis for Patients with AKI, CKD, or ESRD in Certain, Well-Defined Situations.
These situations include:
- •
Patients with decision-making capacity who, after being fully informed and making voluntary choices, still refuse dialysis or request that dialysis be discontinued.
- •
Patients who no longer possess decision-making capacity but who previously indicated refusal of dialysis in an oral or written advance directive.
- •
Patients who no longer possess decision-making capacity and whose properly appointed legal agents/surrogates refuse dialysis or request that it be discontinued.
- •
Patients with irreversible, profound neurological impairment such that they lack signs of thought, sensation, purposeful behavior, and awareness of self and environment.
Recommendation 6
Consider Forgoing Dialysis for AKI, CKD, or ESRD Patients Who Have a Very Poor Prognosis or for Whom Dialysis Cannot be Provided Safely
Included in these categories of patients are:
- •
Those whose medical condition precludes the technical process of dialysis because the patient is unable to cooperate (e.g., advanced dementia patient who pulls out dialysis needles) or because the patient’s condition is too unstable (e.g., profound hypotension).
- •
Those who have a terminal illness from nonrenal causes (acknowledging that some in this condition may perceive benefit from and choose to undergo dialysis).
- •
Those with stage 5 CKD older than 75 years of age who meet two or more of the following statistically significant very poor prognosis criteria (see Recommendations 2 and 3 ): (1) clinicians’ response of “No, I would not be surprised” to the surprise question; (2) high comorbidity score; (3) significantly impaired functional status (e.g., Karnofsky Performance Status score less than 40); and (4) severe chronic malnutrition (i.e., serum albumin less than 2.5 g/dL using the bromocresol green method).
Conflict Resolution
Often there can be disagreement among the stakeholder as to what the care plan should be. The nephrologist might recommend against dialysis treatment believing that dialysis would result in more harm than benefit to the patient. An example is a patient with advanced dementia who would be emotionally and physically distressed by dialysis treatment without any appreciation of the benefits. The family may understandably want dialysis because they do not want the patient to die, but staff may justifiably object to administering treatment that causes suffering. The Guidelines have excellent recommendations for conflict resolution (Recommendation 8) ( Box 20.6 ; Fig. 20.2 ) in such complex cases.
Engage in extended conversation for either request for dialysis when not recommended or refusal of dialysis when recommended:
- •
Why does the patient or legal agent desire dialysis when it is not recommended by the renal care team?
- •
Does the nephrologist misunderstand the patient’s or legal agent’s reasons for requesting dialysis?
- •
Does the patient or legal agent misunderstand the diagnosis, prognosis, and treatment alternatives and why dialysis is not recommended?
- •
Why does the patient or legal agent refuse dialysis when it is recommended by the renal care team?
- •
Is the patient’s refusal of recommended dialysis based on an accurate understanding of the likely benefits of dialysis?
- •
Is the patient’s refusal of recommended dialysis consistent with the patient’s values and goals?
- •
Does the nephrologist understand the psychosocial, cultural, or spiritual concerns and values the patient or legal agent has?
- •
Has the nephrologist consulted a psychologist, social worker, or chaplain for assistance in fully understanding the concerns of the patient or legal agent/family? Have strategies in the Decreasing Provider Patient Conflict project been used as appropriate?
( http://esrdnetworks.org/resources/special-projects/copy_of_DPPCProviderManual.pdf )
For circumstances in which the patient/legal agent requests dialysis when it is not recommended, the following process may be helpful to resolve the conflict:
- •
Consult with other physicians.
- ○
Do other physicians agree or disagree with the attending physician’s recommendation to withhold or withdraw dialysis?
- ○
Is the request for dialysis by the patient or legal agent medically appropriate?
- ○
- •
Consult with an ethics committee or ethics consultants.
- ○
Has the patient or legal agent been informed that the purpose of the ethics consult is to clarify issues of disagreement, and ideally, to enable resolution?
- ○
Has the patient or legal agent met with the ethics committee or ethics consultants to explain their perspective and reasoning behind their request for dialysis?
- ○
Can the ethics committee identify the reasons why the patient or legal agent is resistant to the physician’s recommendation to forgo dialysis?
- ○
Can the ethics committee identify the reasons why the healthcare provider is resistant to the patient’s or legal agent’s desire to begin or continue dialysis?
- ○
Has the ethics committee explained in understandable terms to the patient or legal agent its conclusions and the reasoning behind them?
- ○
Can the impasse be resolved with accommodation, negotiation, mediation, or a time-limited trial of dialysis?
- ○
- •
Document.
- ○
The physician must document the medical facts and his or her reasons for the recommendation to forgo dialysis and the decision not to agree to the request by the patient or legal agent.
- ○
The consultants also should document their assessment of the patient’s diagnosis, prognosis, and their recommendations in the chart.
- ○
- •
Attempt to transfer the patient’s care.
- ○
If reconciliation is not achieved through the above procedure and the physician in good conscience cannot agree to the patient or legal agent’s request, the physician may ethically and legally attempt to transfer the care of the patient to another physician.
- ○
Another physician and/or institution may not be found who is willing to accept the patient under the terms of the family’s request. Physicians and institutions that refuse to accept the patient in transfer and their reasons should also be documented in the medical record.
- ○
- •
Consider consultation with a mediator, extramural ethics committee, or the ESRD network in the region.
- •
Request regional ESRD network to assist with arranging dialysis.
- •
Notify the patient, legal agent, and/or family.
- ○
If no other physician or institution can be found in the community or region by the treating nephrologist to provide dialysis as requested, the physician may inform the patient or legal agent that the nephrologist will cancel the patient’s dialysis orders and the dialysis center will no longer provide dialysis to the patient. The nephrologist is obligated to give the patient sufficient advance notice and the names and addresses of other nephrologists and other dialysis facilities in the area.
- ○
- •
Communicate options.
- ○
The options of filing a grievance with the ESRD network (chronic patients only) or seeking legal or regulatory recourse by the patient or legal agent should be communicated.
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