NeuroPI Case Study: Palliative Care Counseling and Advance Care Planning

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1 Case: An 86 year-old man presents to your office after recently being diagnosed as having mild dementia due to Alzheimer s disease, accompanied by his son who now runs the family business. At baseline he has a high school education. He built up a family home insulation company which became very successful and now employs over 30 people. He lives with his wife, who has congestive heart failure, and they both lead a sedentary life with the assistance of a home health aid and housekeeper. His past medical history is notable for diabetes, hypercholesterolemia, hypertension, hypothyroidism, osteoarthritis, and bilateral hip replacements which, combined with diabetic peripheral neuropathy, causes chronic gait impairment for which he now uses a walker. He has had two hospitalizations over the past year, one for pneumonia, and one more recently for dehydration and delirium. You initiate a conversation about treatment with cholinesterase inhibitors. You emphasize that over the long term, there is no treatment that will prevent the gradual loss of cognitive abilities and the need to become dependent on family caregivers like his son to assist with a number of challenges that will likely arise. The patient tells you that he also has concerns about the health of his wife, who was unable to attend the office visit that day because she was in the hospital for shortness of breath and heart failure. You ask if the two of them have appointed anybody as durable powers of attorney for health care, and he tells you that both he and his wife have recently appointed their son to serve this role if either of them are too ill or incapacitated. You ask for a copy of the document for your chart and recommend they supply this for his other physicians as well. A cholinesterase inhibitor is prescribed and you make an appointment to see him in two months. At the next visit, he is accompanied by his son and wife who is now out of the hospital. They report that his memory seems to be a little better but there is no major improvement in the dementia symptoms. Half-way into the visit you thank him for providing you the health care proxy document and ask he and his wife if they have thought about what they would want done if he were to need respirator support or a feeding tube to support him, should he become extremely ill. Their wishes are noted in the chart and you request a copy of any advanced directive documents they may wish to draw up in the near future. Rationale: Alzheimer s disease is a chronic progressive illness with an average duration of 4-8 years, though some cases survive up to 10 years. The Alzheimer s Association estimates it to be the sixth leading cause of death in the United States; however, degenerative diseases such as Alzheimer s are not commonly recognized as terminal illnesses. About 40% of the illness is spent in the severe stage of the illness, including much of this time in nursing home care. About 2012 American Academy of Neurology Institute Page 1

2 2/3 of people with Alzheimer s disease ultimately die in a nursing home. 1 Patients and their caregivers should therefore receive comprehensive counseling regarding end of life decisions. Discussions about advance care planning are best initiated early in the stage of the illness when the patient still has the cognitive capacity to participate in the process. They should have an advance care plan and surrogate decision maker chosen, and such statements or documents should be included in the medical record. If this is not possible, then this should be explained in the medical record. The Alzheimer s Association provides a checklist for advanced care planning: 2 Those named in the power of attorney document should have a copy of and access to the original document. The person with dementia should name a successor (back-up) agent for power of attorney in the event that the agent may one day be unable to act. The person should consider a neutral third person to have power of attorney if those chosen may not agree. Once a power of attorney for health care document and/or a signed living will is in place, give a copy to the person's physicians and other health care providers. The person with dementia should decide if the agent with power of attorney for health care has authority to consent to a brain autopsy. This may vary according to state law. Consider choosing an attorney or a bank to manage the individual's estate if the person lacks a trusted individual with the time or expertise. Comprehensive counseling regarding end of life decisions includes a discussion of the risks and benefits of the following medical interventions to address the major clinical complications associated with advanced dementia: 3 Hospitalization Treatment for infections Surgery Artificial nutrition and hydration Cardiopulmonary resuscitation Mechanical ventilation Patients with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. 4 One study followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. Distressing symptoms were common, including dyspnea (46.0%) and pain (39.1%). At the end of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Such 2012 American Academy of Neurology Institute Page 2

3 interventions were significantly less likely to occur if health care proxies had an understanding of the poor prognosis and clinical complications of advanced dementia. 5 Aggressive medical treatments when administered to elderly patients with advanced dementia are often futile and medically inappropriate. For example, cardiopulmonary resuscitation is less likely to succeed in these cases, and most who survive in an intensive care setting die within 24 hours. Hospitalizations increase in frequency for advancing dementia, particularly those for treatment of infections that can often be treated in the nursing home with better long term outcomes and less risk for exacerbating mental confusion. Tube feedings do not influence longterm survival. Moreover they do not prevent aspiration, malnutrition, or decubiti, nor do they improve functional status or comfort of patients with advanced dementia. 6 Hospice care is a valuable though underutilized palliative care service for end stage dementia patients that provides both physical support and comfort for the patient and emotional support for the family. A major factor limiting utilization is the Medicare requirement that a physician certify the prognosis for survival to be 6 months or less, which may be difficult to determine with confidence. Nevertheless, the proportion of hospice care being delivered to dementia patients has increased from 1% in 1995 to 9% in There is evidence that hospice care for dementia may be cost-effective, since Medicare costs are lower for hospice enrolled residents than non-hospice residents of nursing facilities. 6 Evidence Base: The following clinical recommendation statements are quoted verbatim from the referenced clinical guidelines and represent the evidence base for the measure: At this stage [i.e., severely and profoundly impaired patients] the treatment team should help the family prepare for the patient s death. Ideally, discussions about feeding tube placement, treatment of infection, cardiopulmonary resuscitation, and intubation will have taken place when the patient could participate, but if they have not, it is important to raise these issues with the family before a decision about one of these options is urgently required. 7 Advance directives and designation of healthcare surrogates should be put in place early, while the patient can still have input. The [physician] should also discuss values, preferences, and goals related to death and dying with patients in early stages of Alzheimer s disease, including do notresuscitate orders, artificial nutrition plans, and healthcare proxies. Expert opinion and Workgroup consensus suggest that [physicians] should initiate conversations with patients and their families about late-stage care and appointing a proxy. Proxies should have extensive conversations with the patient about his or her wishes with respect to a variety of circumstances and situations American Academy of Neurology Institute Page 3

4 A crucial component of [care for nursing home residents] is providing information about the benefits and burdens of [medical] interventions to the resident s surrogate decision maker, supporting development of a care plan that takes into consideration previous wishes of the resident, if any, and his or her best interest as interpreted by the decision maker. The care plan should consider the goals of care and priority order of the three possible goals survival, maintenance of function, and comfort. 6 The National Hospice and Palliative Care Organization provides the Caring Connection web site ( This web site provides resources and information on end-of-life care, including a national repository of state by state advance directives. Advance directives are designed to respect patient's autonomy and determine his/her wishes about future life-sustaining medical treatment if unable to indicate wishes Key interventions, treatment decisions to include in advance directives [are]: resuscitation procedures, mechanical respiration, chemotherapy, radiation therapy, dialysis, simple diagnostic tests, pain control, blood products, transfusions, intentional deep sedation. 9 Reference (1) Thies W, Bleiler L Alzheimer's disease facts and figures. Alzheimers Dement 2011 March;7(2): (2) Alzheimer's Association. Legal plans: assisting a person with dementia in planning for the future. www alz org/national/documents/brochure_legalplans pdf (3) American Academy of Neurology, American Geriatrics Society, American Medical Directors Association, American Psychiatric Association, Physician Consortium for Performance Improvement. Dementia Performance Measurement Set American Medical Association. (4) Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med 2004 October;19(10): (5) Mitchell SL, Teno JM, Kiely DK et al. The clinical course of advanced dementia. N Engl J Med 2009 October 15;361(16): (6) Volicer L. End-Of-Life care for people with dementia in residential care settings. nccdp org/resources/endoflifelitreview pdf 2005;Available at: URL: AccessedJanuary 20, (7) American Psychiatric Association (APA). Pratice guideline for the treatment of patients with Alzheimer's disease and other dementias Arlington (VA), American 2012 American Academy of Neurology Institute Page 4

5 Psychiatric Association. (8) California Workgroup on Guidelines for Alzheimer's Disease Management. Guidelines for Alzheimer's disease managment Los Angeles, Alzheimer's Disease and Related Disorders Association, Inc., Los Angeles Chapter. (9) American Geriatrics Society. Geriatrics at your fingertips: Palliative and end-of-life care. geriatricsatyourfingertips org AccessedFebruary 1, American Academy of Neurology Institute Page 5