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end of life

Family caregivers of an elder with serious health conditions can often be made to feel that they must assist the elder in obtaining aggressive medical treatment for worsening conditions. In the USA, the use of aggressive medical treatment for patients in the final months of life is increasing significantly. ¹

Are the physicians who recommend aggressive medical treatment near the end of life generally helping the elder or are the outcomes of aggressive treatment generally undesirable?

Studies find undesirable outcomes

According to studies published by Medicare News Group ² and by the Journal of the American Medical Association, JAMA ³, aggressive medical treatment for Medicare patients at the end of life has been on the increase with more people receiving care in intensive care units and more people being shuffled between hospital, home and skilled nursing care in the final months of life.

Unfortunately, according to the same studies, it appears that aggressive medical care is not helping the people who receive it live longer or enjoy a better quality of life than people who receive more conservative treatment. Consumer Reports ⁴ has reported that “too much healthcare” can actually shorten a person’s life.

In fact, aggressive treatment can cause stress and pain for the elder and for the family caring for that elder. Consumer Reports notes that families who have lost loved ones after aggressive treatments often say they regret not having recognized sooner that treatment was not beneficial, and adjusting plans and expectations accordingly.

How do physicians fit into this problematic puzzle?

Some experts note that fee for service Medicare rules can lead physicians to pursue more treatment because fees are paid per service. This idea may have some validity, but it may be more illuminating to look at physicians’ attitudes towards aggressive care in general.

Interestingly, a new study from Stanford School of Medicine ⁵ and a recent poll on the physician social media site SERMO ⁶ both indicate that regarding their own medical care, physicians would very rarely choose aggressive treatment, but for their patients facing the same prognosis, they tend to pursue aggressive treatment.

The Stanford study noted that advanced healthcare directives had little impact on aggressive treatment even though, “more than 80 percent of patients say that they wish to avoid hospitalizations and high-intensity care at the end of life.”

Finding the Physician’s Blind Spot

Physicians have a laser focus on diagnoses and treatment of disease, but this laser focus can also cause a major blind spot. A whole person is much more than his or her body’s condition or disease, and yet in the medical treatment process, the person can be “lost” in favor of a focus on a particular physical condition.

Physicians are trained to provide technical services based on specific and technically definable perimeters. They are not trained or paid to deeply examine a patient’s personal life philosophy, personal history and life experience, emotional life, cultural influences, spiritual beliefs, or family and personal relationships.

To put it another way, what doctors know about a patient may represent very little of what a patient may consider to be essential to “who they are.”

In this context it makes sense that a physician, who knows herself as a whole person, would choose less aggressive treatment for herself and pursue more aggressive treatment for her patient, whom she knows primarily as a condition or disease. This outcome is probably unrelated to whether or not the physician is a caring or compassionate person and is rather a result of the constraints of time, function and capacity.

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What can families do?

Firstly, patients and their families need to recognize the limitations of physicians and medical systems in general. These systems and professionals do not have a complete understanding of patients’ personal lives and issues.

When faced with significant medical decisions, it is essential to seek out as much family, friend, professional and spiritual support as is needed.

Taking the time to draft a well considered Advanced Directive for Health Care (ADHC) is a key step. Realize most “check the box” ADHC forms pertain solely to life support and tube feeding. Preferences regarding other aggressive medical treatment must be written out separately. Therefore, multiple conversations will probably be needed with a primary care provider as well as other medical specialists to draft an effective document.

Discussing the ADHC with the persons who may act as authorized representatives is essential. The representative must understand the principles and desires outlined in the ADHC as issues may arise in practice that are not directly addressed in the document. Choosing a representative who has the mental and emotional maturity and capacity to be an effective advocate is also extremely important.

Having an authorized representative who can successfully advocate for the principles of the ADHC to be followed may be as important as the ADHC document itself.

Anne Conrad-Antoville has worked with hundreds of families regarding senior healthcare issues and is CEO and a founder of Champion Advocates LLC, a geriatric case management firm serving elders is Portland, Oregon and family caregivers across the USA and Canada.

References

¹Changes in End-of-Life Care Over the Past Decade:More Not Better Grace Jenq, MD; Mary E. Tinetti, MD; JAMA.

²The Cost and Quality Conundrum of American End-of-Life Care Medicare News Group, (reprinted by HealthManagement.org

³Change in End-of-Life Care for Medicare Beneficiaries; Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009, JAMA

⁴Too much treatment? Aggressive medical care can lead to more pain with no gain Consumer Reports

⁵Most physicians would forgo aggressive treatment for themselves at the end of life, study finds Stanford Medicine News Center

⁶How Doctors Die: Only 7% Choose Extraordinary Measures; SERMO

Questioning Aging Answers

Advanced Directives May Not Prevent Aggressive Medical Treatment

October 7, 2014 Anne Conrad-Antoville

Aggressive medical treatment for Medicare patients at the end of life has been on the increase according to studies published by Medicare¹ and by JAMA².

This aggressive treatment leads to more people receiving care in intensive care units and more people being shuffled between hospital, home and skilled nursing care in their last several months of life.

Unfortunately, the aggressive medical care is not helping those patients studied to live longer, nor are they experiencing a better quality of life than people who receive more conservative treatment.

When polled, people do not generally want this type of care. A Stanford School of Medicine Study³ found that more than 80 percent of patients say that they wish to avoid hospitalizations and high-intensity care at the end of life.

In fact, aggressive treatment can cause chaos and pain for patients and their families. Consumer Reports⁴ notes that families who have lost loved ones after aggressive treatments often say they regret not having recognized sooner that aggressive treatment was not beneficial.

Are physicians working with the intention of Advanced Directives?

Interestingly, both the Stanford study and a recent poll on the physician social media site Sermo⁵ both indicate that physicians, regarding their own medical care, would very rarely choose aggressive treatment. On the other hand, these same physicians tend to pursue aggressive treatment for their patients facing the same proposed prognosis.

The Stanford study noted that advanced healthcare directives had little impact on aggressive treatment:

“In fact, the type of treatments they (the patients) receive depends not on the patients’ care preferences or on their advance directives, but rather on the local health-care system variables, such as institutional capacity and individual doctors’ practice style…”

Why are physicians pursuing aggressive treatment?

Physicians have a focus on diagnoses and treatment of disease, so this singular focus can also cause a major blind spot. A person is much more than his or her condition or disease, and yet in the medical treatment process, the person can be “lost” in favor of a focus on their condition.

As noted by Dr. Periyakoil, author of the Stanford study, “Patients’ voices are often too feeble and drowned out by the speed and intensity of a fragmented health-care system.”

Physicians are not generally trained or paid to deeply examine a patient’s personal life philosophy, personal history and life experience, emotional life, cultural influences, spiritual beliefs, or family and personal relationships.
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To put it another way, what doctors know about a patient may represent very little of what a patient may consider to be essential to “who they are.”

It makes sense that a physician, who knows herself as a person, would choose less aggressive treatment for herself and pursue more aggressive treatment for her patient, whom she knows primarily by condition or disease. This outcome is probably unrelated to whether or not the physician is a caring or compassionate person and is rather a result of the constraints of time, function and capacity.

What can you do to have your healthcare preferences followed?

Patients and their families must recognize the limitations of physicians and of medical systems, in general. These systems and professionals cannot have a complete understanding of patients’ personal lives and issues.

When faced with significant medical decisions, it is essential to seek out as much family, friend, professional and spiritual support as may be needed.

An advanced directive is an excellent starting point, but having a professional or family member who can successfully advocate for its intentions to be followed may be most important.

Anne Conrad-Antoville is CEO and a founder of Champion Advocates LLC, a geriatric case management firm serving Portland, Oregon and Northern California. She has worked with many hundreds of families regarding senior healthcare issues for the past 30 years.

¹The Medicare News Group: “The Cost and Quality Conundrum of American End-of-Life Care”

²JAMA: “Change in End-of-Life Care for Medicare Beneficiaries
Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009”

³Stanford Medicine News Center: “Most physicians would forgo aggressive treatment for themselves at the end of life, study finds”

⁴Consumer Reports: “Too much treatment?
Aggressive medical care can lead to more pain with no gain”

⁵SERMO: “How Doctors Die: Only 7% Choose Extraordinary Measures”

Respect Between Generations

Love Until the End of Life

August 8, 2014 Anthony Antoville

The recent love story that has captured the hearts of millions around the globe is the one of a 62-year marriage between Maxine and Don Simpson of Bakersfield, California.

The images of Don and Maxine holding hands, while lying side-by-side in separate hospital beds, has fired imaginations and hearts everywhere.

And while The Simpsons’ genuine devotion and enduring love for each other is wonderful, it is not the striking chord to this moving story. Nor is the amazing account of how they died only four hours apart from one another with Don finally passing at the moment the family removed his beloved Maxine’s body from the room.

The real heart here is that of the family caregivers. In particular, the two granddaughters who initiated the couples reunion were able to see beyond the many significant challenges created by their grandparents’ major health issues and the consequential logistics involved in such a move and the resulting care that would be required.

A family being sensitive to the emotional and physical needs of their elders is not unique, in itself. Countless families jump in and tirelessly perform endless caregiving tasks every day. What shines through the many layers of this tale is that this family recognized what was needed at the end of these two people’s lives. It was to bring them together in a family home setting and to allow them to simply be. No more medical interventions; no self-serving grieving at the bedside. Just time together.

Melissa Sloan, one of the grandchildren, realized that her family was committed to keeping Don and Maxine together until death did them part, and she did just that.

I have seen how people often become confused when witnessing a loved one reach the end of his or her life, let alone both parents simultaneously. It is common at those last stages of the dying process for family members to become overwhelmed with their own emotional needs and lack of ease during these “real” moments of life.
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Understandably, many families are unable to achieve this depth of compassionate aging, because our western society and contemporary culture mostly fears death and dying and rarely permits us to take the time to allow a life to gracefully and gradually repose into its final earthly state.

However, this family discovered a way to honor the elders for whom they cared, while making the most of what precious time everyone could share together.

Anthony Antoville is COO and geriatric case manager with Champion Advocates LLC in Portland, Oregon. He has been serving the psychosocial needs of seniors since 1991. Anthony is a published author with The Edwin Mellen Press.

Aging and Spirit

Self Compassion and Aging

August 6, 2014 Anne Conrad-Antoville

Let’s be clear. Aging begins from the moment we are born.

In contemporary western society, we tend to view the aging process as positive up to a certain point. The turning point is somewhere in that upward “moving target” that counts as mid-life. From that point, we tend to view aging as a negative process and something to be fought against.

We have all become strongly influenced by advertising for a plethora of “anti-aging” products, counterbalanced with a youth-obsessed focus. Medical efforts and campaigns to cure countless conditions and diseases have been woven into our everyday experience, which can create for us a strange unspoken expectation that western medicine will someday cure us of all diseases and even overcome death itself.

We may experience unwanted reactions to these “anti-aging” and medical messages. The reactions can include unrealistic and unattainable expectations for ourselves and for those we may care for. If our baseline is unrealistic, we can be much too hard on ourselves.

For example, for the person who is a caregiver of an older family member; guilt can become overwhelming when the older person’s health goes into decline. The flawed expectations of a treatment for aging and eventual death cannot be realized. This form of guilt can become self-debilitating and detrimental to the caregiver’s physical and mental health.

For those of us who are passing the mid-life point, our own thoughts can become self wounding and cruel as we find it increasingly difficult to fit ourselves into the a youth-based straightjacket as we age.

Moreover, other cultural conditioning can make it difficult for us to allow ourselves to be self compassionate. At a recent leadership training that I attended, the accomplished female speaker noted in an offside comment, “I have always found it easy to be compassionate for others, but difficult to be compassionate to myself.”
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Why be self compassionate about aging?

Self compassion allows us to be present in the true moment. It helps us to forgive ourselves, to heal our wounds and to appreciate our own best efforts. It allows us to be truly compassionate in our service to others. Self compassion frees us of unnecessary burdens, allowing us to age from our center of being with grace and with wonder.

Anne Conrad-Antoville cared for her disabled mother from her pre-teens through her mid-thirties, when her mother passed away. This experience inspired Anne’s eventual work in professional aging services. Anne is currently CEO and a geriatric case manager for Champion Advocates LLC and manages Working Woman Aging Parents.

Questioning Aging Answers

Pets: Mirroring Our Care and Our Fear

July 24, 2014 Anthony Antoville

“Arthritis – How diet, supplements and alternative therapies can ease those aching joints; How to Care for Your ‘Super Senior’; Catching Cancer Early; Chiropractic Care for Your Senior.”

What reader is this table of contents written for?

Apparently, a popular pet magazine has keyed into our Western obsession with wellness and longevity. It appears to be encouraging us to transfer this obsession onto our pets. If it were not for the cover picture and the magazine’s title, I could very well have been looking at a periodical geared for the non-pet owning reader.

Eventually, some of the article titles returned me to the reality of the subject at hand: “Protect Your Dog’s Joints; Cognitive Dysfunction in Cats; Pancreatitis in Dogs and Cats.”

Now, don’t get me wrong. I have loved and cared for animals all of my adult life and have seen these animals as members of my family. I feed my cats the best foods that I can discern from reviewing nutritional content and food sources. When my Shepard-lab mix suffered from hip dysphasia in his mid-teens, I improved his bed, gave him a daily glucosamine chondroitin supplement and even cared for him through bouts of incontinence until he could no longer easily walk.

Clearly, we need to care for the animals that are dependent upon us to thrive and survive, but have we taken our society’s obsession for longevity too far by imposing it onto our family pets?

Is our fear of disease and death causing our pets to live with conditions and undergo therapies and surgeries primarily to make us feel better about ourselves?

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Pets are a primary connection between us and the natural world of animals and other forms of life. How do our societal obsessions affect our relationships with the natural world and to our own natural cycles of life? How far out of control have our fears become?

Anthony Antoville is COO of Champion Advocates LLC in Portland, Oregon. He has been serving a wide range of elder needs since 1991. Anthony is a published author with The Edwin Mellen Press.

*Introduction: Why Worry About Cancer in Pets? Withrow & MacEwen’s Small Animal Clinical Oncology (Fourth Edition) Edited by: Stephen J. Withrow, DVM, DACVS, DACVIM (Oncology), and David M. Vail, DVM, DACVIM (Oncology)

Animal Wellness Magazine Vol 16 Issue 4

Compassionate Aging