wonderful mother, and deserves only that."
common refrain comes from children of aged, ill parents.
Families struggle with decisions, confronting the inevitable
while providing parents with love and care. Modern medicine
often offers endless treatments-but illnesses eventually
progress and the focus must ultimately shift to end-of-life
care. Moments that Matter: Cases in Ethical Eldercare
reflects Dr. Gordon's extensive experience with families
struggling with poignant and difficult decisions.
"Caring effectively and lovingly for the elders in our
families can present daunting dilemmas. Moments that
Matter: Cases in Ethical Eldercare provides invaluable
information and insights for all concerned. Dr. Michael
Gordon has given us a timely and timeless gift with this
-Steven R. Sabat, Ph.D., Professor of
Psychology, Georgetown University
"Dr. Gordon has
written a thoughtful and indispensible guide to aid families
facing difficult choices in caring for aging family members.
There is no other single resource that so deftly and
expertly draws together the necessary elements to navigate
this phase of the life course."
M.D., Director, Joint Centre for Bioethics, University of
"Drawing on a rich supply of vignettes
from his vast clinical experience, Dr. Michael Gordon brings
good advice and trenchant analysis to families caring for
older relatives. Moments that Matter: Cases in Ethical
Eldercare is informative, practical, and
compassionate-everything that struggling caregivers
-Muriel R. Gillick, M.D., Professor of
Population Medicine, Harvard Medical School
|Product dimensions:||5.90(w) x 8.90(h) x 0.60(d)|
About the Author
professor, ethicist, and one of Canada's best known
geriatricians. His work to advance the understanding of
aging and end-of-life care is valued by both public and
professional audiences. Dr. Gordon explores and
addresses the difficult questions of caring for the elderly.
Read an Excerpt
Moments that Matter: Cases in Ethical EldercareA Guide for Family Members
By Michael Gordon
iUniverse, Inc.Copyright © 2010 Michael Gordon M.D., MSc, FRCPC
All right reserved.
Chapter OneThe Nature of Aging and the Health Care System
One of the great success stories of the last and present centuries is that more people are living into old age than ever before. The population in the Western world is aging rapidly. For many, the later years are full of satisfaction, with joys coming from watching families grow as well as from the pursuit of personal interests and activities. In response to the aging of the population, new opportunities have developed that did not exist years ago: special travel arrangements for seniors so they can continue to explore the world; educational opportunities at universities, colleges, and community centers that cater to all levels of curiosity and taste; and exercise and sports programs geared to those in the later years so they can develop and maintain physical prowess and function. New industries have grown to respond to the special interests and needs of the aging population.
But with all the successes, the reality for many older individuals is that at some time they may face a serious illness or decline in physical and mental function. The likelihood of developing certain types of ailments increases with age, even among those who take health promotion and disease prevention strategies seriously.
Although two-thirds of seniors may continue through their very late years with intact mental function, Alzheimer's disease and other causes of dementia may affect as many as one-third of people over the age of eighty-five. Other disorders that affect the heart, blood vessels, kidneys, and brain may be disabling. Care for those affected by diseases that undermine the ability to make decisions or provide self-care is being assumed by devoted sons and daughters like yourself and other members of your family.
Most families undertake the care of a loved one with enormous devotion and dedication. In a modern and busy world, it is often a mammoth challenge for families or sometimes friends to figure out who will do what and when for an ailing older parent, uncle, aunt, spouse, or significant other. Families and friends often come together to care for an older loved one, even at great personal, emotional, and financial stress. In a society in which families often live far from where they were born or where their loved ones reside, it is a greater challenge to meet some of the needs that may occur during times of crisis and physical or mental decline.
The concepts of medical ethics have entered mainstream medical care at these critical times, and, when faced with sensitive, threatening, and sometimes agonizing choices, you and your family may seek guidance as to the right or best way to make tough caregiving decisions. The ethical framework of such decision-making draws on many of the intrinsic values held by those of you involved in the decision-making process. These decisions are often affected by the ethical, religious, ethnic, cultural, and professional backgrounds of those of you involved. The values and beliefs of your parent who is usually the patient, of you and your family, and of professional caregivers must be taken into account. Also the cultural values and legal frameworks that exist in the community in which you all live become part of the consideration when decisions have to be made.
The media often present the aging of the population as a crisis because of the projected increased demands on health care and social service systems in addition to the increased involvement and responsibility of family members like you. But it is not beyond the capabilities of Western societies to respond in a positive and supportive manner to the existing and potential wishes and needs of the aging population. For the general population and those who are elected or appointed to develop public policy to properly fulfill the population's expectations of good-quality health care for the aging population, many myths about aging have to be dispelled.
Myths about Aging
One overarching myth is that every aged person will decline in health and function and therefore become a burden on his or her family and on the health care and social service systems. This includes the notion that these inevitable events will become a drain on valuable resources from other members of society, including the younger generation. A number of studies attest to the fact that the vast majority of older people continue to be productive members of society well into their very late years. Many work or volunteer as well as spend their money on household and other items, thereby contributing to the viability of society. Many not only contribute to their family's well-being through financial transfers from the older to the younger generation but also participate in child care for family members. No less important, many seniors act as mentors and role models to younger family members. Educators in the field of aging observe that many doctors who chose geriatrics and the care of elderly as a career path attribute their choice at least partly to the role modeling and closeness they experienced with older family members during their formative and critical developmental years.
Older individuals in your family and you with other members of your family can undertake many strategies to assure the best use of the health care system to fulfill your individual needs and reflect the best ethical values as to how all of us should use the available societal resources. One example is taking all steps possible to maximize your own health status.
Another myth about aging is that, after a certain time, which is never clearly defined, it is too late to make any health care changes that affect your future health or function. At any time of life, any of us at any age can make many changes in lifestyle that can result in physical or mental benefits to well-being and function. Whatever personal belief systems you have, you can make a good decision to maximize your health-whenever possible and within the limits of human disposition and frailty-through whatever lifestyle modifications that have been shown to have a positive effect on short-term and long-term health outcomes.
Most people, for example, know that cigarette smoking is not healthy. It is generally acknowledged that public health measures to decrease the likelihood of youngsters beginning to smoke, to decrease access to smoking venues, and to acknowledge the negative health aspects of secondhand smoke may decrease the need for health care resources for illnesses caused by smoking. Health care providers recognize how difficult it is for smokers to stop smoking even when they know about its negative health effects. Individuals can take some control of the decision-making process to stop smoking by exploring avenues that might work for them. Maybe it's through counseling sessions alone or in groups or the various medications developed to support those who have decided to stop smoking. Strong public policy supporting smoking bans and decreasing exposure to secondhand smoke (in restaurants, bars, airplanes, and public buildings, for example) has been shown to promote a culture of lower cigarette sales and less tobacco use.
Each of us can decrease our personal risk of needing the health care system for tobacco-related diseases (such as lung cancer, chronic bronchitis and emphysema, and heart disease) by taking on the improvement of our own health status and promoting and supporting public policy that does so at a societal level. For elders in your family who smoke, cessation can have sustained beneficial effects, and it is never too late to stop. Although the risk factor for lung cancer may not diminish substantially, because it is based on the cumulative effect of the previous years of tobacco exposure, effects on chronic lung and heart disease can be beneficial. There can be a decrease in susceptibility to lung infections and angina attacks with a discontinuation of smoking while the other medically necessary steps are taken. In addition to improving symptoms, if done properly, stopping smoking can demonstrate to an older family member that he or she can exercise some control over personal well-being. This often requires a concerted effort, which might include medications and group supports, which have become more available for those who wish to stop smoking. Also, grandparents can be instrumental in avoiding exposing grandchildren to secondhand smoke and not providing them with a negative role model. Resources to help in the process can be found at the Web sites of the American Lung Association and the Canadian Lung Association.
The same principles apply to many other aspects of health care for which preventive steps can supplement and perhaps decrease the need for formal health care-related treatments, such as surgery or medications for lifestyle-related illnesses. Personal lifestyle changes can decrease dependency on the health care system and its myriad treatments in a number of areas. These include obesity, a sedentary lifestyle, dietary choices that increase vascular (blood vessel) illnesses (such as blood pressure, heart attack, and stroke), and excessive use of potentially harmful agents such as alcohol and unnecessary prescription and over-the-counter medications.
It is a myth that older people can't exercise. Many senior programs have modified exercise programs for seniors, including those with physical disabilities. There are group programs for movement often with music, pool programs for those with arthritis or Parkinson's disease for which the buoyancy in water makes movements easier, and chair-based exercises for those who have decreased mobility. Many community-based senior programs cater to the older frail population, and these can usually be found through a community resource center. Many YMCAs and other such organizations have programs developed for and directed to the senior population.
Using the Health Care System Well
At some time, all of us will have to use some aspect of the formal health care system because of an illness or potentially disabling condition. The most important step any of us and our family members can take to assure the best outcomes possible is to know about the medical conditions being treated and what alternative and reasonable treatment options exist. Many individuals feel overwhelmed by the health care system and the number of health care professionals with whom they must communicate. Sometimes patients and their families do not ask reasonable and important questions for fear of appearing foolish or to avoid conflict with health care providers. But asking reasonable and well-thought-out questions should result in a reasoned response.
In 2007, in its quest to decrease untoward or adverse outcomes among older hospitalized patients in the United States and enhance overall quality of care, Medicare, the primary insurer for older Americans, indicated that it would not reimburse hospitals for certain adverse outcomes that were avoidable, thus putting the onus on hospitals and health care providers to take steps to provide optimal care to their patients. The patients would not be responsible for the payments; rather, the potential loss of reimbursement to the hospitals is believed to be a motivating force to improve the quality of hospitalizations and care.
Points to Remember
There are many myths about aging-one of which is that all elders become increasingly frail and ultimately dependent. People age at varying rates, depending on biological and environmental factors. Each of us can make some lifestyle changes to decrease the rate and degree of functional decline and thereby maximize function and active participation in life. If you must use the health care system, be knowledgeable about the medical conditions being treated and ask about what alternative and reasonable treatment options exist.
Chapter TwoYou and Your Aging Family Member: Maintaining the Fabric of Caring and Love
Your family structure and the relationships among its members is probably one of the most important aspects of life. During our developmental years, a major part of our human endeavor is focused on how we grow and relate to our parents, grandparents, and siblings. In later life, it is how we relate to a spouse, children, grandchildren, and extended family. The old adage "blood is thicker than water" reflects the almost-universal acknowledgment that the way we connect to our family, even those who may be distant, is special.
Even though many of us have friends with whom we might share more of our daily lives, family ties matter to a great degree to most of us. These bonds often become more important during the later years.
Unfortunately, it is common for family ties to become stretched and challenged when families face the decline of a parent. This is especially true when it appears that one member of the family is carrying an inordinate amount of the care responsibilities.
I recently experienced a situation in which a son of an elderly woman who had significant dementia turned up for the first time in my office accompanying his mother. His father was being strained beyond his coping abilities but would not consider any external assistance, community program, or institutional care. Also at the visit was his younger sister, with whom I had worked over the previous year and who was the primary caregiver for their parents, who were clearly struggling to maintain themselves in the community.
The son became involved when he recognized that a crisis was brewing. Somehow he erroneously assumed that his sister was not being forceful enough to get things done or did not know what she was doing; therefore, he thought he had to, in his own words, "make things happen."
The burning question to be considered was how did this family address the family and ethical issue of who was going to make decisions for the parents. The mother clearly was not in a position to make significant decisions about her care because of her mental incapacity. Was her husband able to do so? The daughter had always carried the responsibility of working through the family dynamics; her father had the notion that everything would be okay and refused to acknowledge the stress he was under and the negative effect his indecision had on his daughter. The daughter's personal life and family were stressed by the demands being made on her time and physical and emotional energy.
Until the visit to my office, the son, who was being protected by his father and sister because, as they said repeatedly, "He is too busy with his company," was only tangentially engaged. When he came to the visit, perhaps as a way to justify his absence for most of the time, he emphasized how busy he was, how many hours he worked, and how many people he employed.
Now the son was going to take charge (as he did with his business) and wanted answers and clear direction, which, as he learned, was easier asked for than done. He said he would make sure his father listened to him about his mother's needs. He seemed to overlook or diminish the fact that his sister was undertaking most of the arrangements and would run to their parents' home in the middle of the night when the mother was wandering about the house. He was not aware that his mother would at times begin to bake cakes in the kitchen for a holiday that was not occurring and reject her husband's pleas to return to bed.
With some discussion, the son began to appreciate the complexity of what was going on and how a "quick fix" was not possible. Suggestions were made as to social work assistance and the need to make plans and consider future options for care. Because it appeared that the mother was not capable of making decisions for herself, the immediate ethical issues were these:
Who could not just legally but actually make the choices for the mother?
When choices were considered on behalf of the mother, what if those choices had a serious negative effect on the patient and the other family members?
What if the father/husband refused any external help, even though it put his wife at some risk of injury?
What if the son made certain decisions on behalf of his parents that his sister thought were potentially dangerous?
What if the son wanted to do things that were in conflict with the parents' wishes and desires? What could or should the daughter do to try to achieve positive goals while at the same time avoiding harming her parents' interests and avoiding major conflict with her older brother?
Excerpted from Moments that Matter: Cases in Ethical Eldercare by Michael Gordon Copyright © 2010 by Michael Gordon M.D., MSc, FRCPC. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
1. The Nature of Aging and the Health Care System....................1
Myths about Aging....................2
Using the Health Care System Well....................4
2. You and Your Aging Family Member: Maintaining the Fabric of Caring and Love....................6
3. Concepts of Medical Ethics, and How They Relate to Aging....................12
Translating Ethical Concepts into Meaningful Action....................12
The Meaning of Ethics in Everyday Terms....................15
Narrative Ethics: A Place for "Me"....................17
Maximizing Life or Extending It....................19
Gulliver's Travels: Lessons to Be Learned?....................23
The Timeline of Decline....................25
Common, Everyday Activities: Driving....................30
Romance and Sex....................34
4. Decision-Making: The Individual and the Surrogate Decision Maker....................42
Shifting the Balance....................45
How Decisions Are Made: Personal and Ethical Aspects....................46
Is There a Way to Make Things Clear?....................47
5. Truth-Telling as an Example of Balancing Benefits and Harms....................49
6. Challenges in Age-Based Medical Care: It Isn't Easy to Be Old and Sick....................55
Why the Ageism?....................56
Trying to Assure Good Care....................58
7. Balancing Acts: When Goals Conflict....................60
8. The Many Players in Ethics and Care....................63
9. Is Quality of Life Everything? Secular and Religious Views....................66
When Quality of Life Rather than Religious Issues Are in Question....................71
10. Issues in Feeding and Drinking....................78
The Meaning of Food and Drink....................79
An Emotional Conflict with No Easy Answers....................81
The Ethical Debate: Balancing the Principles....................82
The Process of Decision-Making....................83
When Feeding by Mouth Is the Right Choice-Even if Dangerous....................86
Framing the Ethical and Emotional Challenge....................89
11. Levels of Care: Finding a Balance Between Giving and Receiving Care....................92
Exploring the Ethical Issues: Who Makes the Choices of Treatment, and Why....................95
12. Challenges Posed by the Acute Hospital System....................97
How to Say "Yes" to Treatments....................98
How to Say "No" to Treatments....................103
13. Cardiopulmonary Resuscitation (CPR): Reality and Myth....................107
14. Long-Term Care....................114
Who Decides If a Move to a Long-Term Care Facility Is Necessary or Preferred?....................117
What If the Parent Rejects Help?....................119
Who Decides Where?....................121
What Are the Limits to Care?....................123
15. End-of-Life Care Decisions....................126
Living Wills: Not Always the Answer....................128
Stopping Treatment: How and Who Decides?....................131
16. Palliative Care: Achieving the Goals of Comfort and Dignity....................136
17. Ethical Perspectives of Health Care Professionals....................143
The Duty of Health Care Professionals to Be Vaccinated....................145
Conflicts with Patients and Families....................148
18. The Final Journey....................150
Glossary of Commonly Used Ethical Terms....................151
About the Author....................171