Successful aging

At last month’s GSA meeting, I attended several sessions on successful aging and disability.  I was particularly interested in exploring the intersection of aging and disability because I was preparing for a class debate on assisted suicide at the time. 

What is successful aging?

In the influential MacArthur Foundation Study of Aging in America, begun in 1987 with findings published in their Successful Aging book in 1998, Rowe and Kahn defined successful aging as the ability to maintain three key behaviors or characteristics:  1) low risk of disease and disease-related disability, 2) high mental and physical function, and 3) active engagement with life.  While Rowe and Kahn noted the achievements of persons with disease-related disabilities (Stephen Hawking, Mother Teresa, Franklin Roosevelt), they maintained that freedom from disease and disability is a positive thing.  Compression of morbidity is a goal of disease prevention initiatives. 

Yet, the minority view of disability challenges any implication that disability is a negative outcome.  In addition, this successful aging definition has been criticized for assuming individual autonomy/control and lifestyle choices, without considering subjective/cultural perceptions and broader socio-economic conditions facing older adults that may limit their options in life.  In Outliers: The Story of Success, Malcolm Gladwell emphasizes opportunity and legacy—no one ever makes it alone.

Clearly, there is a need to revise this definition of successful aging to be more inclusive and to encompass factors such as resilience and adaptation to aging processes (Baltes’ selective optimization with compensation, Kahana’s preventive and corrective proactivity).  To join the lively conversation, the presenters in Public Health Implications of Healthy and Successful Aging (BSS) symposium posted their presentations online at http://healthyandsuccessfulaging.wordpress.com/. 

Next year’s GSA annual meeting theme is Optimal Aging Through Research (http://www.geron.org/images/pressreleases/2012/rubenstein.pdf)

What’s new about disability?

New Investigations of Aging with Disability (BSS) symposium featured data from National Institute on Disability and Rehabilitation Research (http://www2.ed.gov/about/offices/list/osers/nidrr/index.html).  While persons with disabilities are living longer due to advances in medicine, rehabilitation, public health and technology, they are experiencing an earlier onset of age-related conditions (osteoporosis, diabetes, obesity).  About 12 million Americans with disabilities acquired in early or mid-life are over age 50, thus aging with disability. 

Ivan Molton (http://agerrtc.washington.edu/) noted that secondary health conditions are frequently described as more significantly disabling than the original condition itself; for example, a person diagnosed with multiple sclerosis often copes with secondary conditions like chronic neuropathic pain, spasticity, gait/balance problems with greater fall risk, cognitive impairment, higher risk of infection, hypertension, accelerated arthritis, etc.  Middle-age is “lousy” for individuals aging with long-standing disability conditions because this is when highest demands meet new limitations; fatigue and pain are the most frequently reported and impairing; and falls are prevalent and injurious.  These secondary health conditions can be addressed with multidisciplinary pain treatments; interventions for fatigue and cognitive impairment; and falls prevention.

Tamara Heller (http://www.ihrp.uic.edu/researcher/tamar-heller-phd) created these word clouds for Aging and Disability, highlighting the prominence of health, exercise and program as common themes in health promotion interventions.  Disability can learn from aging’s greater focus on interventions for specific diseases/conditions and use of peer leaders delivering health promotion interventions.  Aging can learn from disability’s programming for people with cognitive impairments, adherence to principles of self-determination and adaptation of equipment for people who have physical disabilities.

Assisted suicide: autonomy or aging & disability risk?

For my Aging in Multidimensional Context class, I was assigned to a debate team opposing the legalization of assisted suicide.  Our major arguments were based on traditional morality that prohibits killing innocent human lives, the sanctity of a physician’s Hippocratic oath, the slippery slope effect that foresees the gradual devaluation of human life with risk to vulnerable groups, and alternatives available (hospice/palliative care for comfort and pain management, psycho-social counseling for depression/fear of losing control/adapting to impairments, etc.) to address an individual’s reasons for even considering assisted suicide.

Here’s what I had to say about assisted suicide’s risks to vulnerable groups like the elderly and persons with disabilities:

On a micro level, assisted suicide impacts the patient-physician relationship and vulnerable patients who can be manipulated into assisted suicide that’s not really their own choice.  A 1998 study by Georgetown University's Center for Clinical Bioethics found a strong link between cost-cutting pressures on physicians and their willingness to prescribe lethal drugs to patients – were it legal to do so.  The American Medical Association has opposed assisted suicide as being inconsistent with the physician’s role as healer, such as killing pain (Hippocratic “do no harm” oath), versus role as partner in assisted suicide to intentionally kill patients; how can a physician act in a patient’s best interest once a physician is given license to kill?  Does it make sense to hasten death when medical breakthroughs for treatment or cures are possible, while death is irreversible?

Proponents argue assisted suicide is about autonomy, that doctors should respect a competent and informed patient’s wishes and choices.  They attempt to draft laws to provide safeguards so assisted suicide is available to persons who are competent and informed.  Yet, one’s ability to make rational decisions is compromised by experiences of pain, isolation, depression, fears of disability/dependency and losing control, worry about being an undue financial and caregiving burden, prognoses about terminal illness and estimates of remaining life expectancy that can be unreliable.  When emotions are raw and continually evolving, one’s judgment is understandably impaired.  If a rational person is determined to commit suicide, it’s possible without legalizing assisted suicide to involve a physician. 

On a mezzo level, assisted suicide impacts the following groups:  patient’s family and friends who are concerned about a patient’s time left to live; elderly and persons with disabilities who see themselves as targets in assisted suicide laws that apply to terminally ill and/or those suffering incurable diseases and painful conditions; and the poor who become easy targets when assisted suicide is used as a form of medical cost containment in decisions on whether to prolong or shorten their lives. 

On a macro level, assisted suicide impacts religious groups (except Unitarians) that respect the sanctity of life for all persons (appreciating their remaining capacities versus the biomedical view that illness/disability diminish quality of life and the capitalist view that productivity determines the value of life); health care financing that would promote assisted suicide as a cost-cutting measure; and the public that may become accustomed to the idea of assisted suicide when the state sets a dangerous precedent by legalizing assisted suicide and eventually becomes desensitized to the very nature of assisted suicide.

As we have seen in European countries, legalizing assisted suicide sets the stage for the beginning of a slippery slope that expands to active euthanasia, as well as extending assisted suicide beyond the terminally ill to devaluing the lives of the elderly, infirm, disabled and other vulnerable groups who would be denied access to life under assisted suicide.  Since 1942, Switzerland has allowed assisted suicide if the motive is not selfish, and has even applied assisted suicide to the mentally ill. In 2001, the Netherlands legalized both assisted suicide and active euthanasia in cases of “hopeless and unbearable” suffering from serious medical conditions and considerable pain. In 2002, Belgium followed the Netherlands.  In 2009, Luxembourg legalized assisted suicide and active euthanasia for the terminally ill and those with “incurable diseases or conditions.” Since 2010, a citizens group in the Netherlands has campaigned for “Out of Free Will” initiative to extend assisted suicide for people over 70 years of age who feel “tired of life” (http://www.rnw.nl/english/article/right-die-elderly-back-centre-dutch-debate).

http://howtodieinoregon.com/

Those who support assisted suicide are primarily white people who are accustomed to power and privilege in their lives, and they want autonomy/control over how to die.  During Oregon’s Death With Dignity Act’s first 14 years (1998-2011), there were 596 patients who died after taking lethal meds: median age was 71 years, 98% were white, 81% had terminal cancer, 90% enrolled in hospice care, and all but 10 had health insurance.  Major end-of-life concerns were:  91% losing autonomy, 88% being less able to engage in activities making life enjoyable, and 83% loss of dignity.  About 23% reported concerns about pain (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx).  These psycho-social reasons for seeking assisted suicide suggest that perhaps we need to create more compassionate and supportive environments to dignify terminally ill persons? 

States, which represent society’s rights for the common good, should not legalize assisted suicide to benefit the rights of individuals in this elite group.  Doing so is dangerous because we live in a society of growing socio-economic inequality and prejudice in which the delivery of health care in a profit-driven system already creates disparities in treatment and pain control.  If vulnerable groups aren’t even getting health care they need while living, it’s doubtful they’d get more sensitive treatment when they’re dying.  It is unconscionable to talk about legalizing assisted suicide when low-income persons do not have access to comprehensive medical care including pain management and hospice care.  Putting the lives of so many vulnerable people at risk for the possible benefit of an elite group is unacceptable.

Individual patient autonomy/choice is an illusion.  In reality, assisted suicide is open to abuse by doctors and health insurance companies under financial pressure to contain costs of caring for the terminally ill.  In 2008, reports surfaced that the state-run Oregon Health Plan doesn't cover life-prolonging treatment like chemotherapy unless there is a better than 5% chance it will help the patients live for five more years; but it covers life-terminating assisted suicide, defining it as a means of “therapeutic treatment” or providing comfort, no different from hospice care or pain medication.  In its denials, Oregon Health Department informs patients about the availability of physician-assisted suicide; cancer drugs cost $3K-$6K per month versus lethal meds cost $35-$50 for one-time use (assuming no complications like vomiting)(http://abcnews.go.com/Health/story?id=5517492).  Under these pressured circumstances, can a patient truly exercise autonomy when given a “choice” between an offer of fully-paid assisted suicide and alternative of no affordable medical treatment?

Further, this loss of autonomy justification for assisted suicide is disturbing, especially to persons with disabilities.  The late SFSU Professor Paul Longmore wrote about his outrage over a state’s refusal to fund independent living for persons with disabilities, yet its willingness to support their assisted suicide (http://www.raggededgemagazine.com/archive/p13story.htm).  Where are our priorities when a state supports so-called Death with Dignity, but not Life with Dignity and compassion for all persons? 

Longmore provided this testimony against assisted suicide before the California Assembly, suggesting that tolerance of death for persons who live years with disabilities stem from fear and societal prejudice, and the need to reframe what autonomy and dignity means to replace any shame of needing help (http://www.independentliving.org/docs5/longmore1592.html): 

“Fear of disability typically underlies assisted suicide. All but one Oregonian who died under that state's law feared, not pain, but losing autonomy or control of bodily functions. The advocates play upon that horror of ‘dependency.’ Said one, ‘Pain is not the main reason we want to die. It's the indignity. It's the inability to get out of bed or get onto the toilet....’ [People]...say, 'I can't stand my mother - my husband - wiping my butt.' That's why everybody in the movement talks about dignity.  If needing help is undignified and death is better than dependency, there is no reason to deny assisted suicide to people who will have to put up with it for 6 or 16 years, rather than just 6 months. Not that we favor assisted suicide if it is limited to terminally ill people. We simply want to ask, has this country gotten to the point that we will abet suicides because people can't wipe their own behinds?”  

Many people fear the three 3 D’s—Disease, Disability, Death—which has an upside of causing us to develop humility over these common experiences, forcing us to face the Big Questions about the meaning and value of life.  If this makes us live with more purpose and intention, then maybe this unlocks the key to successful aging.