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end of life

The Need to Feed—A Powerful Force

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Abstract
Food is clearly one of the essentials of life. Most people in the more developed world consider food as much for its culinary delights and aesthetics than for its nourishment attributes. Eating and feeding is one of the first experiences among virtually all mammals and for humans the tie to feeding/nurturing process starts with the first suckle and ends with either last swallow—or when medical technology joins the complex end of life process—when the last drop of tube feed is administered. For many family members the differences between eating and drinking which is associated with the pleasure of the first maternal feed and a life-time of socially mediated eating, and artificial nutrition and hydration as only a matter of interpretation—for others there is no comparison. How this plays out in end of life situations varies for many reasons: physicians can help families make decisions about most feeding situations to help the family's interpretation of their loved one's preferences.
Key Words: End of life care, tube feeding, artificial nutrition and hydration.

The mothers of all living species appear to have a biologically determined need to feed their young. For those interested in the natural world, among its many wonders is the extent to which this applies and the care taken in feeding the young—often with careful maternal deliberation for fair distribution of food, and at times, the care taken with those in need of preferential feeding.

For humans it is a given, virtually from birth, that the desire to be fed as expressed by a newly born infant is matched by the desire to respond to that visceral connection by the mother—so much so that failure to respond usually is an indicator of some serious aberration or illness that interferes with what most would consider the "natural" order of such a relationship.

This same fixation on the importance of food in human relationships often plays out in the determination that spouses and children express when it comes to feeding a frail, failing elderly loved one—irrespective of whether the desire or ability to eat normally or at all has been undermined by a medical condition. In my own experience as a geriatric medical specialist with a special interest in late-stage dementia and, more recently, palliative care, such an inborn drive to feed one's loved one is sometimes taken to inordinate lengths.

Some scenarios appear to repeat themselves, even if the individual's circumstance appears to differ. A common example is a person with end-stage dementia where cognitive abilities are severely compromised. This condition is often associated with impairments in the desire to and/or ability to eat despite often very time-consuming and almost heroic efforts by family and professional caregivers.

Often the question of artificial tube feeding is raised, but depending on the situation, rejected by the family—often rightfully so—because discussions or advance directives (living wills) made by the person rejected such an intervention.

Many in the field would concur with such a decision, as the feeding would provide little if anything in the way of comfort, would not decrease the possibility of abnormal aspiration (inhalation) of food and would add virtually nothing to the quality of the last stages of life.

We have collectively learned that what is called "comfort feeding," by which even small, nutritionally modest amounts of favourite foods provided by a loved one may be the most humane way of demonstrating the devotion associated with feeding, fostering the sense that one's loved one is not being abandoned or even worse "starved to death."

In another common scenario, a patient in a hospice (palliative care unit) with progressive malignant disease often has no appetite and is losing weight as a consequence of the illness. Some families become obsessed with feeding their diminishing loved one, becoming desperate in their quest to find a way to increase eating, often bringing delicacies from home in the hope that something will tweak the appetite. In extreme situations, the family member is almost "force feeding" their loved one with the hope that the right food might improve or even reverse the inexorable course of the terminal stage of the illness.

Sometimes the only thing the dying patient may want is something as simple and flavourful as ice cream—I am a big believer in ice cream as suitable for end-of-life care. But you must choose the right preferred flavour, and not worry about whether it is nutritious or not. If it's enjoyed and savoured—and that is the measure by which to judge – it may be one's last act of kindness to a beloved family member who is in the process of dying.

This article was originally published online at http://www.cjnews.com.

Assault as Treatment: Mythology of CPR in End-of-Life Dementia Care

Assault as Treatment: Mythology of CPR in End-of-Life Dementia Care

Teaser: 

Many people have come to view cardiopulmonary resuscitation (CPR) as a routine intervention following cardiac arrest, and they insist on CPR for their loved ones even when the physician explains its likely futility. Physicians who refuse a family member’s request to perform unwarranted CPR risk becoming the center of media, legal, and disciplinary scrutiny. Although CPR is largely perceived as a benign life-saving intervention, it inflicts indignity and possibly pain on a dying patient and should not be used when it is unlikely to succeed or to benefit the patient if successful. The growing acceptance of do-not-resuscitate orders for patients with advanced cancer has not spread to families of patients suffering from the late stages of other degenerative or terminal illnesses. Having blunt discussions about the true consequences and risks of CPR might foster greater willingness to abstain from administering CPR to patients unlikely to benefit.

This article was originally published by HMP Communications LLC (Annals of Long-Term Care: Clinical Care and Aging), 05/16/2011.

Palliative Care in the Primary Care Setting

Palliative Care in the Primary Care Setting

Teaser: 

Sandy Buchman, MD, CCFP, FCFP, Assistant Professor, Department of Family and Community Medicine, University of Toronto, Toronto, ON; and McMaster University, Hamilton,ON; Palliative Care Physician, The Temmy Latner Centre for Palliative Care and The Baycrest Geriatric Health System, Toronto, ON.
Anthony Hung, MD, FRCPC, Fellow in Palliative Care, University of Toronto, Toronto, ON.
Hershl Berman, MD, FRCPC, Assistant Professor, Faculty of Medicine, University of Toronto; Staff Physician, Department of Medicine, University Health Network, Toronto, ON; Associated Medical Services Fellow in End of Life Care Education, University of Toronto, Toronto, ON.

The principle of “cradle-to-grave” care is fundamental to the discipline of family medicine. This includes palliative care. However, many physicians are not comfortable providing care at the end of life. Challenges include logistical support and proficiency and comfort in the specific skills required, such as pain and other symptom management. The following case presents an example of successful palliative care, provided in the primary care setting, from diagnosis of a life-threatening illness to death in a palliative care unit.
Key words: palliative care, end of life, primary care, family medicine, longitudinal care.

Communication Key to Quality Care of Dementia Patients at End of Life

Communication Key to Quality Care of Dementia Patients at End of Life

Teaser: 

Andrea Németh, MA, Managing Editor, Geriatrics and Aging.

Current research indicates that some 67% of dementia-related deaths occur in long-term care (LTC) facilities.1 The Alzheimer’s Association, a voluntary health organization that provides Alzheimer’s care, support, and research in the United States, recently released the third phase of its evidence-based Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes, which covers end-of-life care practices and issues.

An interdisciplinary team of dementia experts (including physicians, researchers, social workers, and nurses) agreed that communication and advance planning are central to quality care because they “permit residents to receive the care that they would want if they could speak for themselves, and enable families to make the best possible decisions on behalf of their loved ones.”2 The timing of communication about end-of-life and care planning meetings, establishing a proxy decision maker, and educating the resident and family about care and treatments are discussed in detail, and special attention is given to matters such as weighing risks and benefits of pharmacotherapy for residents at the end of life. The guide’s section on physical symptoms urges training of direct care workers, who are often the first to notice changes in residents’ behaviour or symptoms, to recognize and report symptoms that may suggest pain or distress. The recommendations regarding behavioural symptoms remind the care team that behavioural interventions should only be pursued if the behavioural symptom is distressing to the resident involved or poses a risk to the resident or others, and after the source of the behaviour has been determined not to be untreated pain, dehydration, or some other physical symptom.

The recommendations foreground support for the family of patients with dementia. Long-term care facilities are advised to make staff available to educate, counsel, and comfort family members about the signs of approaching death, what will happen when death occurs, and the multiple-stage grieving process that takes place when a loved one dies with dementia.

The recommendations conclude that improving the conditions for individuals dying with dementia in long-term care will become more and more important as the population ages; implementation of these practices will contribute to the experience of a comfortable, dignified death for the individual and a caring, supportive environment for their family.

References

  1. Mitchell SL, Teno JM, Miller SC, et al. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005;53:299-305.
  2. Tilly J, Fok A. Quality end of life care for individuals with dementia in assisted living and nursing homes and public policy barriers to delivering this care. Alzheimber’s Association 2007.

Effective Physician-Patient Communication at The End of Life: What Patients Want to Hear and How to Say It

Effective Physician-Patient Communication at The End of Life: What Patients Want to Hear and How to Say It

Teaser: 


Wendy Duggleby, DSN, RN, AOCN, Associate Professor, College of Nursing, University of Saskatchewan, Saskatoon, SK.
David Popkin, BSc, MD, CM, FRCSC, FSOGC, FACOG, Executive Director, Saskatoon Cancer Center; Head, Division of Oncology, College of Medicine, University of Saskatchewan; Head, Department of Oncology, Saskatoon Health Region, Saskatoon, SK.

What is it that patients at the end of life want to know? What is the best way to provide the information? A review of the scientific literature was conducted to answer these two questions. The findings suggested that, regardless of age or culture, patients at the end of life wanted information about their illness and prognosis. The expertise of the physician, his/her relationship with the patient, and the use of hopeful communication styles were important factors in how patients understood the information provided. Honest and factual communication fostered hope and quality of life at the end of life.
Key words: physician-patient communication, end of life, literature review, palliative care.

Treatment of Nausea and Vomiting in the Older Palliative Care Patient

Treatment of Nausea and Vomiting in the Older Palliative Care Patient

Teaser: 

Hannah I. Lipman, MD, Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, New York, NY, USA.

Diane E. Meier, MD,
Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, New York, NY, USA.

Nausea and vomiting are common problems in the care of the older palliative care patient. Depending on the population studied, incidence is as high as 60%. Distress associated with nausea and vomiting may be relieved in the majority of cases by careful determination of the underlying cause and selection of one or more antiemetic agents. Pathophysiology of nausea and vomiting involves complex interactions among multiple neurotransmitter systems. Antiemetic agents work via modulation of neurotransmitter signalling. Pharmacologic agents are reviewed and geriatric dosing recommendations are made.

Key words: palliative, end of life, geriatric, nausea, vomiting