Ethical and role issues in end-of-life care

Advanced practice in nursing: ethical and role issues in end-of-life care

Editor’s Note: The ANNA Special Interest Groups (SIGs) host a number of networking sessions during the ANNA National Symposium. These sessions typically open with a speaker who presents content on an identified topic. The speaker then serves as a facilitator for discussion and networking among the participants to expand upon and share experiences about the topic. This forum generates useful clinical information that the SIGs believe is valuable to nephrology nurses. The SIG leaders have summarized these sessions in this column over the past year. The Advanced Practice SIG session is summarized here.

The Advanced Practice Special Interest Group (SIG) plans a networking session at the National Symposium every year. The session is designed to be a discussion format of issues facing Advanced Practice Nurses (APNs) working in nephrology. The format is such that we can learn from each other, meet other nurses facing the same issues, and incorporate the solutions into our practice.

The topics presented at ANNA’s 34th National Symposium in Chicago were Ethical and Role Issues affecting the Advanced Practice Nurse. The first part of the session used a case study-based approach to end-of-life care. It was designed to discuss implementation strategies and apply ethical decision making when faced with end-of-life care for our patients.

The group heard two case studies and then discussed in detail the issues surrounding them.

Ethical Issues.

Case study one. E.D. is a 45-year-old, African American male with end stage renal disease (ESRD) due to hypertension and type 2 diabetes mellitus. His medical history includes AIDS with a CD 4 count of 13 and a viral load of 271,000; seizure disorder; anemia (transfusion dependent); CMV retinitis; retinal detachment with vitrectomy; and narcissistic personality disorder. E.D. does not have advanced directives, including a living will or documented power of attorney. He declined to discuss advance directives when approached by the dialysis social worker.

E.D. has been on hemodialysis since June 2002. The infectious disease physician felt that he had AIDS dementia with paranoia. A psychiatric evaluation in November 2002 found him competent to make his own medical decisions.

Case study 2. R.S. is a 42-year-old, Hispanic female with ESRD due to hypertension and diabetes mellitus B type 2. Her medical history includes severe coronary artery disease, hyperlipidemia, obesity, hypothyroidism, secondary hyperparathyroidism, and depression. R.S. has been stable on hemodialysis for 6 years. She does want to be resuscitated if she stops breathing or her heart stops. No other wishes are documented.

The cardiologist indicates a very poor prognosis given her severe coronary artery disease. He indicates that a combined heart/kidney transplant may be her only definitive treatment. This is not an option for R.S. If she was accepted as a transplant candidate, it would require her to relocate to the city where the transplant would be done, and she is unwilling to do this. Maximizing medical therapy is the goal. Addressing end-of-life issues with R.S. and her family are an important piece of the dialysis plan of care.


There was much discussion about these two case studies and the optimal approach to the care of these patients. As is usually the case with end-of-life care, there are many issues to be addressed. Most of the time they are not straightforward. There was also discussion regarding ESRD, hospice, palliative care, and the benefits for which patients may be eligible.

End stage renal disease (ESRD) benefits and hospice. A beneficiary with ESRD may be covered under the Medicare hospice benefit when the terminal diagnosis is unrelated to the ESRD. In this situation, the dialysis facility would continue to bill under the ESRD benefit, and the hospice would bill for the terminal illness under the hospice benefit.

When the terminal diagnosis is other than ESRD (i.e., cancer, AIDS, chronic obstructive pulmonary disease), and dialysis is needed for palliation, the beneficiary may elect to use the hospice benefit and continue dialysis. The hospice provider will be responsible for all dialysis and supplies as part of the care for the terminal diagnosis and palliation. This must be reflected in the plan of care.

When the terminal diagnosis is ESRD and the beneficiary continues to receive health services under the ESRD benefit, the beneficiary cannot elect to use the hospice benefit. This is because two government benefits cannot pay for the same illness/condition of the beneficiary.

Palliative care. Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients. It is especially suited to the care of people with incurable, progressive illnesses. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms, and restoration of functional capacity while remaining sensitive to personal, cultural, and religious beliefs and practices (Task Force on Palliative Care, December, 1997).

Summary of RPA/ASN Guidelines for Appropriate Initiation and Withdrawal from Dialysis

* Shared decision making: Involves the renal care team, to include the nurses and patient and family in health care decisions.

* Informed consent or refusal: Legal documentation and understanding of personal decision regarding health care.

* Estimating prognosis: Evidenced based morbidity and mortality data explained to patient to assist with decision making.

* Conflict resolution: Involves effective communication between physicians, nurses, other health care providers, and/or patients and families.

* Advance Directives: Prior documented patient decisions about health care, which should be honored.

* Withholding or withdrawing dialysis: Describes situations where forgoing or withdrawing dialysis is appropriate.

* Special patient groups: Addresses patients with terminal illness or conditions that make the provision of dialysis very difficult.

* Palliative care: End-of-life care with referrals to professionals with expertise in palliative care when decision is to forgo or withdraw dialysis.

Role Issues

The second part of the networking session discussed identifying tools and resources for effective implementation of the APN role. Each state is different, APNs should know their own state’s regulatory and licensing requirements for practice and prescriptive authority. Some states require a state pharmaceutical number prior to applying for a federal DEA number. Information regarding obtaining a DEA number can be found on the Web site (

Obtaining a Medicare UPIN number for billing purposes was also discussed. A Medicare Federal Health Care Provider/Supplier Enrollment Application must be filled out completely. An application can be obtained from your local provider. To find out who that is, inquire through the billing department of the facility for whom you work.

Collaborate agreements and independent practice were also discussed. Again, this varies from state to state. To find out what your state requirements are go to the Web site at A link for each state is found on this Web site.


Bartlow, B. (2003). Practical application of palliative care guidelines will take time, effort. Nephrology New and Issues, 17(4), 53-58.

The Robert Wood Johnson Foundation (2002). End Stage Renal Disease Workgroup Final Report Summary on End-of-Life Care: Recommendations to the field. Nephrology Nursing Journal, 30, 59-63.

The Robert Wood Johnson Foundation. (2002). End Stage Renal Disease Workgroup Final Report Summary: Recommendations to the field. Retrieved from

The Robert Wood Johnson Foundation. (2002). Advance practice nursing: Pioneering practices in palliative care. Retrieved from

Renal Physicians Association (2000). Clinical practice guideline on shared decision making in the appropriate initiation of and withdrawal front dialysis. Rockville, MD: RPA.

COPYRIGHT 2004 Jannetti Publications, Inc.

COPYRIGHT 2007 Gale Group