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Clinical Crossroads: Susan L. Mitchell A 93-Year-Old Man With Advanced Dementia and Eating Problems JAMA 2007; 298: 2527-2536 [Abstract] [Full text] [PDF]

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Food Refusal: First do no harm

Laura Boylan   (30 November 2007)

Cherishing and Protecting Family at the End of Life

Daniel R Pound   (29 November 2007)

Validating difficult choices

Deborah M Kado   (29 November 2007)

We Are All Persons in Need

Gerard S Brungardt   (29 November 2007)

End of Life Care in an Old Man With Advanced Dementia and Eating Problems

Renzo Rozzini, MD Marco Trabucchi   (29 November 2007)

Food Refusal: First do no harm 30 November 2007
Laura Boylan, MD Department of Neurology, New York University Send response to journal: Re: Food Refusal: First do no harm laura.boylan{at}med.nyu.edu Laura Boylan	Food refusal is common among the institutionalized elderly, particularly those with dementia (1). Attribution of specific causes for such behavior are complex and caregiver-dependent (2). A patient declining food may be characterized as distracted, oppositional, disinterested, depressed, or apathetic. They may be considered to be “letting go”, or, more negatively, suicidal. The use of feeding tubes in advanced dementia is widespread and usually physician initiated despite a substantial body of research which has failed to demonstrate efficacy for any clinical endpoint (3-6). Risks include infection, increased restraint use and a diminution in human contact associated with hand feeding. Multiple professional and advocacy association guidelines oppose routine use of tube feeding in this setting (7-9). A seeming “perfect storm” has conspired to produce this state of affairs. The offering of food is a central expression of human kindness and there is a compelling and commendable impulse to feed those who aren’t eating. Many physicians believe erroneously that tube feeds are efficacious in advanced dementia. Financial incentives favoring tube placement for nursing homes and hospitals and medicolegal concerns are also operative (3). Another important element is a general failure to appreciate that advanced dementia is, indeed, terminal. In one large study, at nursing home admission only 1% of patients with advanced dementia were thought to have a life expectancy of less than six months while 71% died within that period (10). A fundamental failure to appreciate the poor prognosis of advanced dementia is an important barrier to quality end-of-life. Unfortunately my mother suffered similarly to Mr. P. Following a long mental decline she developed both spells of unresponsiveness and a hip fracture, the fixing of which was an orthopedic but not a human success. There is a tremendous bias in medicine to “have something to offer” and “do something”. My ultimate and painful role in my mother’s care was to resist an endless array of consults/tests/procedures for my anxious, frail and elderly mother. Eventually, I sought hospice care. At the hospice needles, beeping IVs and shipment to and from tests in strange places were replaced by a small dedicated permanent staff, spiritual counselors, labradors, and a willingness to forgo a proper diabetic diet. She died peacefully this month, shortly after an intermittent food/fluid refusal became absolute. To Mr. P’s daughter I would recommend continuing to offer regular food and fluids and taking an approach to care which puts comfort and her father’s dignity at the forefront. All possible interventions and tests should be critically evaluated for the extent to which they serve these goals. She should be gently informed that his life expectancy is not long, regardless of interventions, and should be told about hospice care options which may be available to her. While there may be unusual medical circumstances or cultural or moral concerns related to tube feeding in individual cases, the routine offering of tube feeding in the setting of advanced dementia is wrong: it implies established medical benefit and bestows a cruel “onus of refusal” on patients and families. References: 1. Steele CM, Greenwood C, Ens I, Robertson C, Seidman-Carlson R. Mealtime difficulties in a home for the aged: not just dysphagia. Dysphagia. 1997;12(1):43-50. 2. Pasman HR, The BA, Onwuteaka-Philipsen BD, van der Wal G, Ribbe MW. Feeding nursing home patients with severe dementia: a qualitative study. J Adv Nurs. 2003 May;42(3):304-11. 3. Callahan CM, Haag KM, Buchanan NN, Nisi R. Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting. J Am Geriatr Soc. 1999;47(9):1105-1109. 4. Finucane TE, Christmas C, Leff BA. Tube feeding in dementia: how incentives undermine health care quality and patient safety. J Am Med Dir Assoc. 2007 May;8(4):205-8. Epub 2007 Apr 18. 5. Cervo FA, Bryan L, Farber S. To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision- making process. Geriatrics. 2006 Jun;61(6):30-5. 6. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999 Oct 13;282(14):1365-70. 7. Karlawish JH, Quill T, Meier DE. A consensus-based approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians- American Society of Internal Medicine. Ann Intern Med. 1999;130(10):835- 840. 8. Ethical issues in the management of the demented patient. The American Academy of Neurology Ethics and Humanities Subcommittee. Neurology. 1996;46(4):1180-1183. 9. End-of-life decisions. Alzheimer’s Association. http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf. Accessed November 17, 2007. 10. Mitchell SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164(3):321-326.
Cherishing and Protecting Family at the End of Life 29 November 2007
Daniel R Pound, MD UCSF Department of Family and Community Medicine Send response to journal: Re: Cherishing and Protecting Family at the End of Life daniel.pound{at}ucsfmedctr.org Daniel R Pound	Mr. P suffers from eating problems in end stage dementia, as well as a presumed slow growing cancer and a recent hip fracture. His poignant story differs from other end stage dementia patients because he remains alert, recognizes his daughter, and tells her he loves her but doesn’t care if he dies. Although dementia may reduce eating through apraxia, dysphagia, inattention, or confusion, (1) he seems to understand and be capable of eating, but he sees no point in living longer as his world has shrunk to the size of his nursing home room. His story suggests as much acceptance of mortality as depression, so finding hope and meaning at the end of life may be more important for him than antidepressant medicines. His nursing facility has already attended to oral hygiene, dentition, constipation, isolation, and need for feeding assistance. Theories about hypermetabolic state in dementia (2) have not been borne out by studies, (3) and there is no evidence for using appetite stimulants such as megestrol in dementia. His devoted daughter provided ever increasing help with daily activities while she too was aging. Meager financial support through Medicaid for home caregiving may have not alleviated financial and physical hardship for her. Her sacrifice to keep him home until he became agitated, aggressive, and dependent for all daily activities demonstrates her focus on quality of life and family connection. She weighs benefit versus burden (she declined evaluation of his renal mass), and she verbalizes that his quality of life with artificial nutrition would be poor. It is not clear whether she has received information that IV hydration or enteral feedings are not proven to provide comfort, improve functional status, or extend life in severe dementia. (4) Her relative fluency in English may obscure subtle misunderstandings of medical information. Caregiver support organizations (www.caregiver.org) or educational booklets in Russian might help her understand and come to terms with difficult choices. Foreign language booklets are often lacking; www.sachealthdecisions.org publishes literature in Chinese but not in Russian. (5) She is under significant burden by having to decide on medical treatment as his surrogate. If she has cultural, religious, or spiritual concerns, (6, 7) then counseling, chaplain or spiritual care may prove to be the turning point for her. These services available through hospice (which is underused in skilled nursing facilities) (8) would address her concerns about seeing him not eat and respecting his choice not to eat, would facilitate her ability to communicate love and reach closure as he is dying, (9) and would maximize his personal contact and pleasure in eating by hand feeding. Her most difficult struggle is letting go of the father she cherishes to “protect” her. I find that remark to be the key description of her father (possibly her last living relative since no other family is mentioned) – even when he depends on others to bathe, feed, and toilet him, she still treasures and grieves her memory of the father who always provided for, nurtured, and protected her. Daniel R Pound, MD UCSF Department of Family and Community Medicine No relevant financial interests. (1) McNamara EP, Kennedy NP: Tube feeding patients with advanced dementia: an ethical dilemna. Proc Nutr Soc. 2001; 60: 179-85. (2) Knittweis J. Weight loss in cancer and Alzheimer’s disease is mediated by a similar pathway. Med Hypotheses. 1999; 53: 172-4. (3) Mazzali G, Bissoli L, Gambina S et al: Energy balance in Alzheimer’s disease. J Nutr Health Aging. 2002; 6: 247-53. (4) Li I: Feeding tubes in patients with severe dementia. Am Fam Physician. 2002; 65: 1605-10. (5) Mrs. Lee’s story: medical decisions near the end of life. Sacramento Healthcare Decisions, 2004. (6) Steinhauser KE, Christakis NA, Clipp EC et al: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284: 2476-82. (7) Cervo FA, Bryan L, Farber S: To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision- making process. Geriatrics. 2006; 61:30-5. (8) Zerzan J, Stearns S, Hanson L: Access to palliative care and hospice in nursing homes. JAMA. 2002; 284: 2489-94. (9) Payne R: America: What is Required of Physicians? AMA Virtual Mentor. 2006; 8: 609-612. http://virtualmentor.ama-assn.org/2006/09/msoc1- 0609.html
Validating difficult choices 29 November 2007
Deborah M Kado, MD, MS David Geffen School of Medicine at UCLA Send response to journal: Re: Validating difficult choices dkado{at}mednet.ucla.edu Deborah M Kado	Ensuring adequate oral intake in patients with advanced dementia often presents a great challenge because left alone, these patients would surely die sooner than if family, caregivers, or clinicians intervene at some level. However, the literature suggests that artificial tube feeding does not result in better health outcomes including fewer pressure sores, less infections, improved function, palliation, or even prolonged survival (1). When directly faced with imminent dehydration versus intravenous and/or enteral hydration, some may judge not intervening as an action leading towards increased suffering, earlier and unnecessary death. While not able to reverse the dementia and cure the eating problems, clinicians may begin to help family members by providing knowledge and understanding of a difficult situation. A first step might be to understand why a patient with advanced dementia might refuse to eat. Does this patient suffer from progressive dysphagia that is commonly observed in advanced Alzheimer’s disease(2)? Perhaps the patient has no appetite, but is unable to effectively communicate this because of advanced dementia? Is it possible that the profoundly demented patient has enough cognitive capacity left to express a will to die by refusing to eat? The treatment options are to: 1) provide short-term artificial hydration via an intravenous line; 2) place an enteral feeding tube; or 3) provide palliative care with gentle encouragement to take oral feeding as tolerated. The pros of artificial feeding include avoiding imminent death from dehydration while the cons include complications resulting from placing the enteral tube, possible fluid overload, and no clear improvement in clinically important outcomes such as decreased infection, improved function, or even palliation. The pros of palliative care are that it focuses on symptom management to maximize comfort and dignity while the cons may be that for some, there may be increased psychological discomfort in “letting go” of the apparent basic intervention of providing hydration and nutrition. After reviewing the treatment options with family members, clinicians can facilitate an interactive discussion with regards to the specific goals of care for that individual patient. Simply citing medical literature that artificial feeding doesn’t support improved clinical outcomes is likely not that helpful to a concerned family member who is facing issues of imminent loss, potential complex emotions, and uncertainty about the best course of action. Instead, demonstrating empathy for all involved while also being clear that a refusal to eat may represent the natural history of end-stage dementia rather than terminal suffering and starvation might help clarify expectations regarding the dying process (3). In the end, family members of demented patients will eventually make decisions that will feel right for them. Since one can only speculate about what the wishes of an advanced Alzheimer’s patient might be, clinicians may be invaluable in providing comfort to the patient’s loved ones by validating the difficult choices they do make. For Mr. P and his daughter, although Mr. P suffers from advanced dementia, his actions have been consistent and clear, and therefore, I would recommend against artificial hydration and nutrition in this case. 1) Finucance TE, Christmas C, Travis K. Tube feedings in patients with advanced dementia. A review of the evidence. JAMA 1999; 282:1365- 1370. 2) Chouinard J. Dysphagia in Alzheimer's disease: a review. J Nutr Health Aging 2000; 4:214-217. 3) Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000; 342: 206-210.
We Are All Persons in Need 29 November 2007
Gerard S Brungardt, M.D. Harry Hynes Memorial Hospice, Wichita, KS Send response to journal: Re: We Are All Persons in Need gbrungardt{at}hynesmemorial.org Gerard S Brungardt	Good morning, Ms. P. I’m Dr. Brungardt and was hoping we could talk some about your father, especially his eating and drinking. It’s important for you to know that the team taking care of your father will continue to work with both of you to provide the food and water he needs. Sometimes people think we stop food and water as people get sicker and closer to dying. Most commonly, as our body is quieting down, we need less food and water, even less than we may have needed just a few weeks before. Your dad is going to be the best judge of what he needs. Our job is to be aware of and sensitive to those needs and how he expresses them. As you know, he’s been through a lot the past several months. His overall health has been declining for some time, his mind has not been working well, and he has some diabetes and kidney trouble. All of these can contribute to his not wanting to eat. And now we’re afraid he has cancer in his kidneys plus the recent surgery for his broken hip. Often, these will cause a person’s body to be unable to really use the food and water.(1) We’ve been doing a number of things the past few months to give your dad food and water. At this point, we could put a feeding tube into his stomach but I’m afraid he’d pull at it the way he did the IV line and I don’t think it would help him much anyway.(2-4) I’d recommend we give him small amounts of whatever food and fluids he seems to enjoy and is able to swallow. Our nurses have lots of experience with this and I’m sure they’ll find some things he’ll like.(5) It’s common for people to worry and feel guilty their loved ones are going to suffer more or die sooner if they don’t get enough food and water. It sounds like you’re having some of these feelings and what you really want is to be your father’s daughter again. That’s all very normal and I want to assure you your father will not suffer and he’ll do best if we let him be the judge of what he wants.(6) It’s similar to the start of life, a baby has different food and water needs than an adult and we learn to recognize different signals the baby gives us it’s hungry or thirsty, its likes and dislikes. My guess is, as you spend time with your dad, you’ll see different ways he’s letting us know those needs. You know, a big reason any of us eat and drink is to enjoy the company of those with us.(7) What’s important right now is for you to spend the time you want with your dad, as his daughter. No relevant financial interests. 1. Fabbro Ed, Bruera E. Pathophysiology of cachexia/anorexia syndrome. In Bruera E, Higginson IJ, Ripamonti C, von Gunten C, eds. Textbook of Palliative Medicine. London, NY: Hodder Arnold; distributed by Oxford University Press; 2006:527-537. 2. Koretz RL, Avenell A, Lipman TO, Braunschweig CL, Milne AC. Does enteral nutrition affect clinical outcome? A systematic review of the randomized trials. Am J Gastroenterol. 2007;102(2):412-29; quiz 468. 3. Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med. 2001;161(4):594-9. 4. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999; 282(14):1365-70. 5. Hammond L. Food at end of life. J Palliat Med. 2007;10(4):997. 6. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA. 1994;272(16):1263-6. 7. Berkman J. Medically assisted nutrition and hydration in medicine and moral theology: A contextualization of its past and a direction for its future. The Thomist. 2004;68:69-104.
End of Life Care in an Old Man With Advanced Dementia and Eating Problems 29 November 2007
Renzo Rozzini, MD Marco Trabucchi, MD Department of Internal Medicine and Geriatrics (Poliambulanza Hospital, Brescia, Italy) Send response to journal: Re: End of Life Care in an Old Man With Advanced Dementia and Eating Problems renzo.rozzini{at}iol.it Renzo Rozzini, MD Marco Trabucchi	We would like to comment the published case of “A 93-Year-Old Man With Advanced Dementia and Eating Problems” (1). Life expectancy of a very frail 93 year old patient (bedridden, with advanced dementia and eating problems) as the man discussed in the paper is very short, i.e. less than 12 months (2). In a previous study we found that only 20 over 100 patients, confined to bed, affected by severe dementia, and hospitalised for pneumonia are still alive after six months (3). Taking in consideration these numbers, the described case shares many aspects with those of the end of life cancer patients and some indications could be borrowed from the palliative care thinking: a) Requests for cessation of treatment by the patient could be potentially inappropriate since unrelieved pain, suffering or depression may influence their behaviour (“leave me alone! What a terrible life, I don't want!”). Under such circumstances, it is mandatory to address clinical aspects that may be successfully treated. For example, in our mind eating and drinking refusal is a proxy of depression, which in some cases is manageable with drugs. Did the patient receive adequate nursing care of the body and mouth, avoiding packing stools, etc? On the contrary, it is legitimate to hypothesize that total parenteral nutrition or tube feeding are ineffective as in terminal cancer patients. b) The management of patients is damaged if family members are not engaged early in treatment planning (prior to the onset of the dying process). In this perspective it have to be taken in consideration also the racial and national differences, since in dramatic life conditions often we assist to a regression to unpredictable psychological conditions. The efforts of nursing and medical staff (or other counselors) should be directed to support and assist family members in accepting the patient’s impending death. In such circumstances, it is preferable to continue all treatments until conflicts with relatives are resolved and they agree with the palliative approach. c) We suggest to give the final responsibility regarding treatments in the last period of life of patients affected by dementia to physicians, deciding in their own conscience when addressing the decision process. Their competence and human support will reduce the negative attitudes of caregivers regarding the uncertainty for the future and avoid guilty feelings (the most negative psychological condition of family members when end of life decisions have to be taken). Patients with advanced dementia and their families need physicians able to drive the skill care with competence, firmness and human depth. References: 1) Burns RB. A 93-Year-Old Man With Advanced Dementia and Eating Problems. JAMA. 2007; 298:(doi:10.1001/ jama.298.17.jrr70001). 2) Walter LC, Brand RJ, Counsell SR, Palmer RM, Landefeld CS, Fortinsky RH, Covinsky KE. Development and validation of a prognostic index for 1- year mortality in older adults after hospitalization. JAMA. 2001; 285:2987 -94. 3) Rozzini R, Sabatini T, Trabucchi M. Medical Treatment of Acute Illnesses in End-Stage Dementia. Arch Intern Med. 2003; 163: 496-497.