Advance Care Planning in End-Stage Kidney Disease
Patients on dialysis often have multiple comorbidities and generally have a life expectancy substantially shorter than that of the general population. Despite improvements in dialysis care, annual mortality in ESKD remains at approximately 20%. If a patient with ESKD experiences a serious medical event, such as a stroke or heart attack, their likelihood of recovery is significantly less than that of a patient with normal kidney function. For example, an ESKD patient who suffers an out-of-hospital cardiopulmonary arrest has only an 8% rate of survival, and of those who survive, only a small number are alive six months later. Given such sobering figures, health care providers should help establish what the patient’s final wishes are through advance care planning. This post defines advance care planning, describes resources available for providers to help patients determine how medical decisions will be made at end of life and how to have those difficult conversations, as well as what options patients may choose as they approach end of life.
Advance care planning
Advance care planning is the process of defining a patient’s wishes regarding end-of-life events and associated care. It involves reflection, communication and discussion among the patient, family or healthcare proxy and healthcare professionals. Advance care planning may include an advance directive, which is a legal document, such as a living will, providing guidance for medical decisions (such as termination of life support and organ donation) in the event that person becomes incompetent to make those decisions.
The Center for Medicare and Medicaid Services (CMS) has addressed patients’ rights with respect to advance directives. CMS regulation 494.70 (a)(6) Patients’ Rights states that patients must be informed about their right to have advance directives and about the dialysis facility’s policies regarding them. In addition, the regulation Medical Records 494.170 (b)(2) requires facilities to document in the patient’s medical record whether or not an advance directive has been executed.
Several other considerations are important in advance care planning. A health care proxy is a person chosen to make medical decisions (i.e., given medical or durable power of attorney) for a patient who has lost decision-making capacity. Physician Orders for Life-Sustaining Treatment (POLST) are completed after a healthcare professional holds an appropriate conversation with the patient. The form takes the shared decisions made among the patient, family and physicians and creates a medical order to be applied in the event that the patient experiences a significant medical event. All but a small number of states now have programs that conform to POLST requirements.
Advance care planning may seem contradictory during ESKD treatment, when end-of-life care plans are made while the patient is receiving life-sustaining therapy. This inherent conflict is reflected in the fact that among ESKD patients the prevalence of advance directives remains essentially the same as that of the general population (49% vs. 47%).
End-of-life discussions can be difficult for patients, family members, caregivers and clinicians alike. They involve emotions, faith and values, support systems and ultimately patients’ wishes. Questions may be posed as “What if you were to experience…” and should be open-ended. These non-urgent discussions allow the patient to consider what their wishes would be in the event of a catastrophic health event when the patient may not be able to communicate or make decisions. This is a dynamic process rarely accomplished in a single conversation but is instead the product of ongoing interactions among the patient, family, care team and physician that evolves as the patient’s health status changes. The Renal Physicians Association offers several useful resources for addressing the topic of advance care planning with patients.
An important option for patients with ESKD is conservative management, which entails non-dialytic care for the complications of CKD and interventions to preserve and prolong kidney function. Communication with the patient and family and shared decision-making with regard to end-of-life care are essential elements of providing conservative care. Conservative care may allow the patient to have control over quality of life (QoL) when life expectancy is limited.
Palliative support and hospice care
Many patients may experience slow progression of their disease rather than a sudden catastrophic event. As chronic disease progresses patients may elect end-of-life care that includes palliative or supportive care and ultimately hospice care. Palliative care focuses on the relief of symptoms while the patient receives treatment for a significant disease or illness. Goals of palliative care include:
- Relief of symptoms
- Control of pain
- Facilitation of meaningful interactions between patients and their loved ones
- Increased emotional and spiritual well-being
- Reduction of caregiver burden
Hemodialysis patients report a median number of 9 symptoms, with pain being the most common. This is often associated with impaired health-related QoL (HRQoL) and depression. A palliative care team can augment the ESKD care team by providing symptom control for the patient, psychological support for the patient and family, and expertise in areas where the ESKD care team may have little to no experience and training.
Hospice care involves a team-oriented approach to medical care, pain management, and emotional and spiritual support as the patient approaches the end of life. The decision by an ESKD patient to pursue hospice care can be confusing and intimidating. Many times the patient and caregivers are not aware of hospice services available in the setting of ESKD. Patients and families may welcome an opportunity to discuss preferences for care before the patient’s health begins to deteriorate but may have difficulty accepting a terminal diagnosis. However, nephrologists often lack training in how to initiate end-of-life care discussions and may not be familiar with benefits available to ESKD patients at end-of-life.
ESKD patients who are Medicare beneficiaries may access hospice benefits. Medicare policy states that, “Medicare beneficiaries can receive care under both the ESKD benefit and the home health or hospice benefits. The key is whether or not the services are related to ESKD. If the patient’s terminal condition is not related to ESKD, the patient may receive covered services under both the ESKD benefit and the hospice benefit.” Therefore, agencies can provide hospice services to patients who continue dialysis.
Enrollment in hospice benefits requires a medical statement from the physician that the patient has a life expectancy of less than six months. Specific criteria must be met, as delineated in the Medicare regulations.
A primary focus in patient care should be to support patients in achieving the best possible HRQoL. By seeking to understand a patient’s goals and desires in the course of their illness, we have an opportunity to help patients make difficult decisions about their care before they are facing a catastrophic event or at a time when they cannot communicate their wishes. Including palliative and supportive care in the patient’s care plan can help alleviate pain and other symptoms and add significantly to the patient’s QoL. As such, advance care planning represents perhaps the most essential component of patient-centered care.