© Geriatric Times. All rights reserved.
Protecting the Quality of Life of Older Adults
by Prem S. Fry, Ph.D.
| Geriatric Times |
 |
July/August 2001 |
|
Vol. II |
|
Issue 4 |
The growth of sophisticated life-sustaining medical technology, combined with a
greater focus on medical care at the end of life, has resulted in a longer life
for an increasing number of older adults in Canada and the United States.
However, the increasing attention being given to prolonging life has resulted
in insufficient attention to protecting the quality of life of this population
(Council on Ethical and Judicial Affairs, 1992). Thus, for most older adults,
the promise of longevity presents serious concerns about the future quality of
a life that has been prolonged by medical advances.
As a result, for older adults quality of life is becoming much more than a
rating of physical health status as reflected in illness, disease, physical and
functional decline, and infirmity (Schipper et al., 1996). It now includes an
assessment of the way that individuals feel not only about medical and physical
health aspects of their lives but also about their social, emotional and
economic health. In order to explore what constitutes quality of life for most
elderly people and what, in their view, needs to be done to protect this
quality of life, my research associates and I conducted a mail survey of 331
Canadian seniors (181 men and 150 women) between the ages of 60 and 85.
Additionally, we conducted interviews with over 100 older men and women in
various walks of life in order to acquire an in-depth, firsthand understanding
of their quality-of-life-related concerns and what factors contribute to morale
and provide the basis for health and psychological well-being in late life.
Respondents to the mail survey and interviews (Fry, 2001, 2000b, 2000c, 1999)
were invited to comment also on anxieties and concerns regarding their present
and future well-being.
We identified a number of factors that reflect older adults' major concerns
about their quality of life and what courses of action they feel are necessary
to protect it against deterioration. As evident in the Table, respondents had strong convictions about their
inherent right to full control over end-of-life decision making. For example,
they believed they should have an uncontested right to decide when they want to
terminate life. Many respondents expressed the view that they were the best
judges of whether or not their quality of life was at an acceptable level. They
felt that if they were dissatisfied with their quality of life, their right to
terminate life should be recognized and respected by society. In this context,
many respondents to our survey expressed a need for a guaranteed right to
physician-assisted suicide (PAS) at any time they feel that the emotional,
intellectual or physical health-related quality of life has deteriorated to an
unacceptable level.
Although a majority of respondents favored a living will or an advance
directive that would allow them to specify in writing their preference for
medical treatment, most respondents were doubtful about the effectiveness of
this self-determining mechanism if a family member were designated to make
medical decisions for them. Many felt that the proxy naming procedure was not
practical for them, given their family circumstances and lack of contact with
their adult children, and many were doubtful that their advance directives
would be honored by health care providers or their proxy. These concerns
appeared to be pervasive among our sample and also to be very similar to
concerns noted in other earlier studies (Gamble et al., 1991; High and Rowles,
1995; Levin et al., 1999). The respondents expressed the view that highly
qualified court-appointed health care professionals, lawyers and heads of
religious foundations should be called upon to implement older adults' medical
directives in ways consistent with individual needs and preferences. Many
suggested that community-appointed ombudsmen should be entrusted with the task
of implementing advance directives.
Respondents' uppermost aspirations were for empowerment and
self-determination. When asked what constitutes protection of a good quality of
life, many respondents asked for legal assurance of long-term employability,
guarantees of good medical care, economic security and safe living
environments. In addition to wanting complete autonomy and control over
personal decision making, they wished for assurances of a guaranteed income and
of ethical conduct by medical practitioners, legal advisors and government
bodies.
With respect to fears and anxieties for future quality of life, many
respondents worried that with increasing age they may become victims of
violence and abuse. Indeed, many admitted to several such experiences, both
from outsiders and from within the families of their adult children. For many
respondents, particularly those who were economically disadvantaged, the
greatest threat to their quality of life was the absence of protection against
such threats.
Many elderly people worry about abandonment in late life; they fear that the
social system, through sheer negligence, will allow them to die alone, without
social support or adequate physical or emotional care. These fears persist
notwithstanding the fact that many of the respondents acknowledged firm
religious commitments and affiliation with church groups (Fry, 2000b).
How Can Practitioners Help?
More dialogue between practitioners and the elderly people they serve is the
first step toward helping elderly clients and patients overcome their mistrust
of the very professionals whose major role and responsibility it is to serve
and protect their interests. Many seniors complained that professionals were
not sufficiently concerned about receiving fragmented and frequently
contradictory information from the various professionals with whom they had
dealings. Many respondents with serious health problems were upset and
frustrated by the professionals' lack of interest in discussing the complex
choices related to initiating, withholding or terminating medical
treatment.
One recommendation that has emerged from these studies is for practitioners
to engage more frequently in discussions concerning end-of-life health-related
issues directly with their elderly patients, as opposed to consulting
secretively with other family members, and to provide the elderly patients with
reassurance that their wishes and preferences in regard to medical treatment or
its detention will be fully respected.
Often, younger members of the patients' families lack the confidence or
competence to handle end-of-life decisions for their elderly relatives. Thus,
many seniors who have conflictual family relationships prefer to rely on their
physicians and other health care providers to clarify complex medical or other
social services choices open to them.
Given the recent interest of a growing number of elderly people to support
PAS legislation, it seems likely that physicians and other health care
providers may be called upon to engage in informal discussions concerning
patients' access to PAS. One of the major concerns that emerged out of the
findings of our study and interviews is the naivete of many elderly PAS
advocates regarding the laws governing PAS procedures and the complexity of the
issues involved. All respondents, whether naive or well-informed, supported the
notion that it should be the primary responsibility of their primary health
care providers to initiate dialogue on the so-called "new discipline" of
physician-assisted suicide and the related privileges.
The laws pertaining to PAS are still quite unclear, and there have been few
test cases in Canada. In the United States, however, numerous reports, books
and articles that identify a few of the medical and ethical issues are
beginning to appear (Benson, 1999; Chin et al., 1999; Cohen et al., 1994; Lee
et al., 1996). We encourage health care practitioners to talk with elderly
adults about end-of-life issues (Miles et al., 1996) and, to the degree to
which the patients themselves are willing, provide accurate information on
issues related to advance-care planning and other more remote medical choices
such as PAS.
Physicians, social work personnel and other care providers should
collaborate to refer their patients to seminars, workshops or other educational
materials that are designed to inform older adults on current developments in
legalized euthanasia practices, patient requests and physician responses to PAS
requests. Additionally, health care providers need to be more familiar with the
underlying attitudes, cultural values and religious preferences of their
elderly patients so that in the event of decisional incapacity in patients,
they are able to recommend and implement medical directives consistent with
their individual patients' needs and preferences. Physicians, however, are
urged to be quite open with their patients about their personal views in
matters of PAS and advanced directives.
Some Personal Observations
Although many elderly respondents were fearful about the impending threats
to their health, they made it abundantly clear that the quality of their
intellectual and emotional life was much more important to them than prolonging
life. Contrary to stereotypes that portray the elderly as frail, confused,
passive and vulnerable to public opinion (National Center for Health
Statistics, 1993, 1991), our observations about the older adults who
participated in our study were that they had clear and consistent views about
the quality of life they desire. Our study participants were not only vibrant
and involved, but quite articulate about their rights to personal control in
decision-making, autonomy and self-determination to pursue a chosen lifestyle.
Few of our respondents viewed old age to be a downward trajectory, and very few
were willing to accept that with increasing age they would be forced to
compromise their quality of life (Fry, 2000a). These observations about our
respondents challenge traditional beliefs that most elderly people do not have
any hopes or aspirations for their future. On the contrary, our findings show
that many older adults desire to actively pursue challenging and stimulating
activities and are reluctant to delegate decision-making powers with respect to
their health and well-being.
Dr. Fry is research professor at Trinity Western University in Langley,
B.C., Canada, and is a registered practicing psychologist who works regularly
with elderly clients. Dr. Fry is also editor-in-chief of Ageing International,
the official journal of the International Federation on Ageing.
References
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