In advanced dementia, studies have found feeding tubes do not result in improved survival, prevention of aspiration pneumonia, or improved healing of pressure ulcers. Feeding tube use in such patients has actually been associated with pressure ulcer development, use of physical and pharmacological restraints, and patient distress about the tube itself. Assistance with oral feeding is an evidence-based approach to provide nutrition for patients with advanced dementia and feeding problems; in the final phase of this disease, assisted feeding may focus on comfort and human interaction more than nutritional goals.
American Academy of Hospice and Palliative Medicine
Five Things Physicians and Patients Should QuestionDownload PDF
Numerous studies—including randomized trials—provide evidence that palliative care improves pain and symptom control, improves family satisfaction with care and reduces costs. Palliative care does not accelerate death, and may prolong life in selected populations.
In about a quarter of patients with ICDs, the defibrillator fires within weeks preceding death. For patients with advanced irreversible diseases, defibrillator shocks rarely prevent death, may be painful to patients and are distressing to caregivers/family members. Currently there are no formal practice protocols to address deactivation; fewer than 10% of hospices have official policies. Advance care planning discussions should include the option of deactivating the ICD when it no longer supports the patient’s goals.
As stated in the American Society for Radiation Oncology (ASTRO) 2011 guideline, single-fraction radiation to a previously un-irradiated peripheral bone or vertebral metastasis provides comparable pain relief and morbidity compared to multiple-fraction regimens while optimizing patient and caregiver convenience. Although it results in a higher incidence of later need for retreatment (20% vs. 8 % for multi-fraction regimens), the decreased patient burden usually outweighs any considerations of long-term effectiveness for those with a limited life expectancy.
Topical drugs can be safe and effective, such as topical non-steroidal anti-inflammatory drugs for local arthritis symptoms. However, while topical gels are commonly prescribed in hospice practice, anti-nausea gels have not been proven effective in any large, well-designed or placebo-controlled trials. The active ingredients in ABH are not absorbed to systemic levels that could be effective. Only diphenhydramine (Benadryl) is absorbed via the skin, and then only after several hours and erratically at subtherapeutic levels. It is therefore not appropriate for “as needed” use. The use of agents given via inappropriate routes may delay or prevent the use of more effective interventions.
The American Academy of Hospice and Palliative Medicine’s (AAHPM) is the professional organization for physicians specializing in Hospice and Palliative Medicine. AAHPM’s 4,900 members also include nurses and other health care providers committed to improving quality of life for patients and families faceing life-threatening or serious conditions. AAHPM is dedicated to advancing the discipline of Hospice and Palliative Medicine through professional education and training, development of a specialist workforce, support for clinical practice standards, research and public policy.
For more information, visit www.aahpm.org.
How this list was created: The American Academy of Hospice and Palliative Medicine’s (AAHPM) president appointed a special task force to coordinate the development of the Academy’s recommendations. Chaired by a member of the Board of Directors who had previously overseen AAHPM’s education and training committees, the task force included representatives of the Academy’s Quality and Practice Standards Task Force, Research Committee, Ethics Committee, Public Policy Committee and External Awareness Task Force, as well as at-large appointees that represent distinguished leaders in the field. The task force solicited input from AAHPM’s 17 Special Interest Groups, and task force members also offered their own suggestions for the list. Considering the potential impact and evidence to support the proposed recommendations, the task force identified seven finalists for which a rationale and evidence base was further developed. All AAHPM members were invited to comment on and rank these seven recommendations. Member feedback informed the task force’s final deliberation, which included narrowing the list to the “Five Things” and refining the verbiage of the recommendations. The list was then reviewed and approved by the AAHPM Executive Committee.
AAHPM’s disclosure and conflict of interest policy can be found at www.aahpm.org
Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med. 2000;342(3):206-210.
Hanson LC, Ersek M, Gilliam R, Carey TS. Oral feeding options for people with dementia: A systematic review. J Am Geriatr Soc. 2011;59(3):463-472.
Kuo S, Rhodes RL, Mitchell SL, Mor V, Teno JM. Natural history of feeding-tube use in nursing home residents with advanced dementia. J Am Med Dir Assoc. 2009;10(4):264-270.
Palecek EJ, Teno JM, Casarett DJ, Hanson LC, Rhodes RL, Mitchell SL. Comfort feeding only: A proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc. 2010;58(3):580-584.
Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev. 2009 Apr 15;(2):CD007209.
Stratton RJ, Ek AC, Engfer M, Moore Z, Rigby P, Wolfe R, Elia M. Enteral nutritional support in prevention and treatment of pressure ulcers: A systematic review and meta-analysis. Ageing Res Rev. 2005;4(3):422-450.
Teno JM, Gozalo P, Mitchell SL, Kuo S, Fulton AT, Mor V. Feeding tubes and the prevention or healing of pressure ulcers. Arch Intern Med. 2012;172(9):697-701.
Teno JM, Mitchell SL, Gozalo PL, Dosa D, Hsu A, Intrator O, Mor V. Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA. 2010;303(6):544-550.
Teno JM, Mitchell SL, Kuo SK, Gozalo PL, Rhodes RL, Lima JC, Mor V. Decision-making and outcomes of feeding tube insertion: A five-state study. J Am Geriatr Soc. 2011;59(5):881-886.
Elsayem A, Smith ML, Palmer JL, Jenkins R, Reddy S, Bruera E. Impact of a palliative care service on in-hospital mortality in a comprehensive cancer center. J Pall Med. 2006;9:894-902.
Elsayem A, Swint K, Fisch MJ, Palmer JL, Reddy S, Walker P, Zhukovsky D, Knight P, Bruera E. Palliative care inpatient services in a comprehensive cancer center: Clinical and financial outcomes. J Clin Oncol. 2004 May 14;22(10):2008-2014.
Gelfman LP, Meier D, Morrison RS. Does palliative care improve quality? A survey of bereaved family members. J Pain Symptom Manage. 2008 Jul;36f:22-28.
Higginson IJ, Finlay IG, Goodwin DM, Hood K, Edwards AG, Cook A, Douglas HR, Normand CE. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003;25:150-168.
Jordhoy MS, Fayers P, Saltnes T, Ahlner-Elmqvist M, Jannert M, Kaasa S. A palliative care intervention and death at home: A cluster randomized trial. Lancet. 2000 Sep 9;356(9233):888-893.
London MR, McSkimming S, Drew N, Quinn C, Carney B. Evaluation of a comprehensive, adaptable, life-affirming, longitudinal (CALL) palliative care project. J Pall Med. 2005;8:1214-1225.
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small cell lung cancer. N Engl J Med. 2010;363:733-742.
Goldstein N, Carlson M, Livote E, Kutner J. Brief communication: Management of implantable cardioverter-defibrillators in hospice: A nationwide survey. Ann Intern Med. 2010;152(5):296-299.
Goldstein NE, Lampert R, Bradely EH, Lynn J, Krumholz HM. Management of implantable cardioverter defibrillators in end-of-life care. Ann Intern Med. 2004;141(11):835-838.
Russo, J. Deactivation of ICDs at the end of life: A systematic review of clinical practices and provider and patient attitudes. Am J Nurs. 2011;111(10):26-35.
Weschules DJ. Tolerability of the compound ABHR in hospice patients. J Palliat Med. 2005;8(6):1135-1143.