Over the last several years, evidence has emerged supporting the importance of discussions regarding palliative and end-of-life care with patients living with end-stage renal disease. A recent Institutes of Medicine report, “Dying in America: Improving quality and honoring individual preferences near end of life,” (2014) calls for better understanding of the role of palliative care for people living with chronic conditions, including those with ESRD.1
Advanced care planning (ACP) refers to the whole process of the end-of-life (EOL) care discussion (palliative and/or hospice care) that considers patient/family values, goals and preferences. These are written documents such as a living will or durable power of attorney for health care. The ACP process can occur anytime during the illness trajectory and can be revisited often, especially when there is a change in health condition. A major issue is that conversations often do not take place in clinical settings because patients, family members, and clinicians wait for the other to initiate the dialogue.1 As the U.S. healthcare system experiences an aging population with many having one or more chronic diseases, it is no longer acceptable for clinicians to avoid engaging in dialogue about palliative and EOL care.
Dialogue about ACP should begin long before an individual has ESRD; however, this is not always the case. A great opportunity occurs during kidney disease education (KDE) when clinicians and patients/family members often make decisions about kidney replacement therapy (KRT) and palliative or hospice care (if hospice eligibility criteria is met).
All patient education should include what palliative or hospice care means. Palliative care, as defined by the IOM, is “care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness and their families.”1 Palliative care encompasses hospice care––a service delivery system providing palliative care for patients with a life expectancy of six months or less.
Prolonging life vs. providing quality of life
Despite a call for provider/patient/family-shared decision-making regarding ACP, the U.S. Renal Data System and Medicare data indicates many older adults undergoing dialysis receive aggressive care focused on prolonging life and not directed at quality of life. About 50% of older adults with ESRD die in a hospital setting as compared to other Medicare beneficiaries who have other chronic debilitating illness.2 Further, many patients on long-term dialysis are eligible for hospice benefits, yet few are referred before death.3
There are significant variations among practitioners regarding ACP unaccounted for by patient characteristics.4 Variations may be due to nephrology providers feeling ill-prepared for an ACP conversation with their patients, reinforcing the need for further training and education.5
Palliative care addresses symptoms associated with chronic illnesses to improve the quality of life for patients and families by focusing on prevention and relief of suffering through early identification, assessment, and treatment of pain: physical, psychosocial, and spiritual. Palliative care services have a vital role in the care and management of individuals with ESRD, including patients choosing not to initiate dialysis or those who may want to withdraw from dialysis. Patients who decide to forgo dialysis generally have a poor prognosis, impaired functional status (ability to manage activities of daily living) and a number of co-morbid conditions and thus, could significantly benefit from palliative or hospice care.
Resources to support ACP dialogue
The Renal Physicians Association (RPA) has developed guidelines entitled Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd edition (2010).6 The guidelines address several important aspects of EOL care, including:
- Establishing a shared-decision-making relationship
- Fully informing those with acute kidney injury (AKI) and stage 4-5 CKD about diagnosis, prognosis, and treatment options
- Facilitating advanced care planning
- Making a decision to not initiate or to discontinue dialysis
- Recommendations for resolving uncertainty to start dialysis or not
- Providing palliative care
These guidelines are available for free for RPA members and for a nominal fee for nonmembers at www.renalmd.org6
In 2008, the American Nephrology Nurses Association developed learning modules on EOL.7 The modules provide information regarding:
- Facilitating advanced care planning
- Incorporating cultural diversity
- Ethical and legal issues
- Developing a plan for palliative and hospice care
The modules are available free of charge for ANNA members and for a nominal fee for non-members at www.annanurse.org7
The Kidney End-of-Life Coalition was initiated to support those with advanced CKD. Over the past decade, prognostic tools have been developed to help health care professionals talk with their patients about what to expect from the medical community; what can and cannot be done for a person with a chronic disease. Supportive care is the continuum of palliative care and includes providing patients with relief from symptoms, pain, and stress of a serious illness. The goal of the Coalition is to improve the quality of life for both patients and families from the time of diagnosis through end-of-life care. Resources are available at http://www.kidneysupportivecare.org/Home.aspx. 8
Gauging the need for end-of-life care
The ‘surprise question” has shown to be useful in identifying those who are in greater need for ACP planning. Ask yourself, “Would I be surprised if this person died in the next year?” If the answer is no, ACP should be broached with the patient so as to have time to discuss choices while in a low stress atmosphere. In older adults, functional status is a more accurate predictor of mortality than age.
Although multiple resources are available for ACP planning, barriers still exist. For example, when do you initiate this EOL discussion? Too early may be an issue because patients’ preferences and circumstances will change over time. Too late or never and the person’s wishes and preferences may not be honored. Getting it right depends on many factors, including religious and culture, education/knowledge, and prognostic stratification.
Billings and Bernacki suggest six characteristics of a “just right” ACP discussion:
- Patients should understand their medical condition and treatment options, along with the risks and benefits of these options
- Patients’ values, goals, and preferences should be specific about EOL care (life-sustaining measures, hospice/palliative care)
- When appropriate, take an inter-professional approach
- Give the person time to reflect and discuss with family and/or other health care professionals promoting informed decision
- Document the discussion and decisions
- As the medical condition changes, choices should be revisited. 9
Patients and families often have poor knowledge of their disease trajectory and rarely have conversations with their health care providers about goals of care. For the most part, nephrology clinicians may not be prepared to guide these conversations. This supports the need for additional training and education for nephrology clinicians regarding how to effectively communicate about ACP. In the meantime, use of the available resources can help guide providers in having these important conversations.
1. Committee on approaching death: Addressing key end-of life issues, National Institute of Medicine of the National Institutes of Health. In Dying in America: Improving quality and honoring individual preferences near the end of life. September 17, 2014
2. U.S. Renal Data System, USRDS 2014 Annual Data Report: Atlas of End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, Md., 2014
3. Murray AM, Arko C, Chen SC, Gilbertson DT, Moss AH. Use of hospice in the United States dialysis population. Clin J Am Soc Nephrol. 2006 Nov;1(6):1248-55
4. O'Hare AM, Rodriguez RA, Hailpern SM, Larson EB, Kurella Tamura M. Regional variation in health care intensity and treatment practices for end-stage renal disease in older adults. JAMA. 2010 Jul 14;304(2):180-6
5. Davison SN. Integrating palliative care for patients with advanced chronic kidney disease: recent advances, remaining challenges. J Palliat Care. 2011 Spring;27(1):53-61
6. Shared decision-making in the appropriate initiation of and withdrawal from dialysis, Renal Physician Association Clinical Practice Guidelines, 2nd ed. Rockville, Md., 2010
7. Alexander L. American Nephrology Nurses' Association News and Events 1/17/08
9. Billings JA, Bernacki R. Strategic targeting of advance care planning interventions––The Goldilocks phenomenon, JAMA Intern Med. 174(4): 620-624, 2014