A Guide to Caring for Aging Family Members

Posts tagged ‘difficult-decision’

Would you choose to die at 75?

There’s a TV in the weight room at the gym where I go to attempt to stave off old age. Sometimes I catch the Steve Harvey Show, and have, on a couple of occasions, seen two cute and charming little old ladies who have been best friends for nearly 100 years.  At those times I have commented to whomever is around, “I don’t want to live to be 100, but when I see these two ladies I reserve the right to change my mind.”

In The Atlantic article “Why I Hope to Die at 75,” Ezekiel Emanuel (Director of the Clinical Bioethics Department at the U.S. National Institutes of Health, Department Head of Medical Ethics & Health Policy at the University of Pennsylvania, and former advisor on health policy for the Obama Administration) makes a similar remark:  “Seventy-five years is all I want to live. I retain the right to change my mind and offer a vigorous and reasoned defense of living as long as possible.”

Emanuel might also say that I am “making a valiant effort to cheat death and prolong life as long as possible”—that I am one of the cultural types he labels, “the American immortal.”  But actually, he would be wrong.  What I am actually trying to accomplish is maintaining the best physical abilities and quality of life that I can for whatever years remain in my life.

For you see, although I find Emanuel’s chosen age of 75 to be somewhat arbitrary (which he acknowledges) I do, overall, agree with what he has to say. What follows in a synopsis of some of his remarks, which I will illustrate with my own life experiences, as well as  previous blog posts.  Unfortunately, the older I get the more death-related life experiences I have to relate.

Why I Hope to Die at 75

To see the full article, click on:

http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

Why I Hope to Die at 75: An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly.

Ezekiel J. Emanuel  is 57 years old, and has the year 2032 as his target date to “check out” because—“Seventy-five. That’s how long I want to live: 75 years.”  Now I’ve got to tell you, Ezekiel, that age is making me a little squeamish because it gives me just 9 more years.  I don’t think I will have done or seen all that I want to in that amount of time.  But it does give me some leverage to say to my husband, “Look Don.  We really need to get on the stick and start seeing the world!”  (He’s always putting his retirement and our travel off for later.)

But, Emanuel is sure of his position, despite his assertion that : death is a loss; it deprives us of experiences and milestones, of time spent with our spouse and children; and, in short, of all the things we value.  But he also sees as simple truths:

  • Living too long is also a loss.
  •  It renders many of us either disabled, or at least faltering and declining.
  • It robs us of our creativity and ability to contribute to work, society, and the world.
  • It transforms how people experience us, relate to us, and remember us (as no longer vibrant and engaged but feeble, ineffectual, and even pathetic).

My husband and I were his mother’s caregivers for seven years, four of them in our home. This is, indeed, the process of decline we observed on a daily basis.  She used to say, “I want to live to 100.  I don’t want to miss anything.”  One of the thought that crossed my mind at those times was that I do not want my grandchildren to remember me that way.

Emanuel states that by the time he reaches 75, he will have lived a complete life having: loved and been loved; seen his children grown and succeeding; seen the grandchildren launched; pursued life’s projects and made contributions.  If he dies after these accomplishments and before he has too many mental or physical limitations, his death will not be a tragedy.

In 1994, my father-in-law passed away suddenly in his sleep one night. He had even played tennis the previous morning. Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at 8:00 in the morning, but shocked when she nudged him and he did not respond. Yes, it was a shock, but he died in a way that many of us would “like to go.”   Although there was a profound sense of loss, his death was not a tragedy.

On the other hand, my father died in 1963 at the age of 48 after four years of a “secret” illness. He left a young wife and two teenage children behind. He was forever deprived of the ability to say goodbye to life and those he loved. To me, this was a tragedy.

For further information about my life-altering experience, see:
Different Perspectives on Grief
Missing Childhood: The Overlooked Caregivers
People cope with death in many different ways – The Patriot-News

It is important to note, however, that Emanuel is clear:

  • He actively opposes legalizing euthanasia and physician-assisted suicide.
  • He believes that the focus should be on giving all terminally ill people a good, compassionate death.
  • He will limit the amount of health care he will consent to after 75.

I followed with interest (and posted in this blog) the case of Barbara Mancini.  I believe it fits well with Emanuel’s discussion about terminal illness.  Mancini is a Pennsylvania nurse who was accused of helping her 93-year-old father commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die.  Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.

See:  A Controversial Issue Worthy of Comments

Emanuel states that although Americans may live longer than their parents, they are likely to be more incapacitated, both physically and mentally. In other words, we are growing older, but our older years are not of high quality. Over the past 50 years, health care hasn’t slowed the aging process so much as it has slowed the dying process.

I have a dear friend who was diagnosed with a brain aneurism when she was 64. Because she feared having a stroke, she elected to have brain surgery.  She suffered a traumatic brain injury during surgery resulting in a stroke, additional surgery to relieve the pressure on her brain, 6 weeks in a coma, and the inability to use 3 of her 4 limbs.  A once vital, vivacious woman, she now lives in a nursing home, a shell of her former self.

But even if half of people 80 and older live with functional limitations, and a third of people 85 and older with Alzheimer’s disease, that still leaves many elderly folks who have escaped physical and mental disability—who are functioning quite well. Emanuel contends, however, that even if we aren’t demented, our mental functioning deteriorates as we grow older.  As we move slower with age, we also think slower, and lose our creativity—backing this concept up with the following chart:

Productivity Chart

Emanuel recognizes that there is more to life than being totally physically fit, productive, and creative, and that many people want to use their life experiences to mentor successive generations. But, he argues that when parents live to 75, children have had the joys of a rich relationship with their parents, but still have enough time for their own lives, out of their parents’ shadows. He feels that living too long places significant burden upon our progeny, stating, “Of course, our children won’t admit it. They love us and fear the loss that will be created by our death. And a loss it will be.  A huge loss. They don’t want to confront our mortality, and they certainly don’t want to wish for our death.  But even if we manage not to become burdens to them, our shadowing them until their old age is also a loss. And leaving them—and our grandchildren—with memories framed not by our vivacity but by our frailty is the ultimate tragedy.”

My daughter-in-law’s mother passed away last summer 5 months after a sudden diagnosis of colon cancer that had spread to her liver.  She opted not to undergo treatment, which might have extended her life, but not have allowed her to live as she wanted.  Because she was only 68, her decision was very difficult for her husband and children to accept.  I truly admired her for the strength of her convictions and the courage of her choice in making what must have been an incredibly difficult decision.
See:  My Counterpart: a Go-To Grammy

So, since Ezekiel Emanuel does not believe in assisted suicide, what does he say he will do, once he has lived to 75?

  • “My approach to my health care will completely change. I won’t actively end my life. But I won’t try to prolong it, either. I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability.”
  • “Obviously, a do-not-resuscitate order and a complete advance directive indicating no ventilators, dialysis, surgery, antibiotics, or any other medication—nothing except palliative care even if I am conscious but not mentally competent—have been written and recorded. In short, no life-sustaining interventions. I will die when whatever comes first takes me.”

Emanuel supports the following health care policies:

  • He is against using life expectancy as a measure of the quality of health care (i.e. longer life does not translate to better care). He supports biomedical research and the need for more research on Alzheimer’s, the growing disabilities of old age, and chronic conditions—not on prolonging the dying process.
  • I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging. Are we to embrace the “American immortal” or my “75 and no more” view?

In summary, Ezekiel Emanuel states: “But 75 defines a clear point in time: for me, 2032. It removes the fuzziness of trying to live as long as possible. Its specificity forces us to think about the end of our lives and engage with the deepest existential questions and ponder what we want to leave our children and grandchildren, our community, our fellow Americans, the world. The deadline also forces each of us to ask whether our consumption is worth our contribution.”

You may want to revisit some of my other older posts about this difficult topic:

The Conversation Project
Hospice: When Should They Get Involved?
Burdening Our Kids Again
Quality vs. Quantity of Life
It Pays to Prepare

Barbara Matthews

My Counterpart: a Go-To Grammy

 

 Sunrise

My grandchildren’s Grammy, in other words—my counterpart—passed away on Father’s day.  Up until the last half year of her life, she was a vital woman and a go-to grandma.  She and her husband were married for nearly 44 years–two months less than I have been married to mine.  He wrote her eulogy, a beautiful tribute to his wife and their marriage.  The eulogy was hard for him to deliver at the funeral; he did it, but broke down.  My 6-year old granddaughter sat beside me, my arm around her holding on tight.  She cried when she saw her grandfather cry.  My 3-year-old grandson was a little wiggly in my lap; he being too young to understand.

Really, none of us “understands.”  Sure we know that we all live, and then we all die.  But we would drive ourselves to madness if we tried to make sense of the who’s and the how’s and the why’s, or the “fairness” of it all.

It’s also so hard to know what to say to someone who is unexpectedly diagnosed with cancer and decides not to undergo treatment.  So I tried to express my feelings by telling her:

“I am thinking about…

how overwhelmed you must have felt at the seemingly sudden onset of your disease;

how difficult it has been for you to decide what path to take;

the strength of your convictions in deciding your course of action;

your incredibly difficult decision and the courage of your choice;

how you are living life on your own terms;

the wonderful job you have done raising your children who have pulled together in providing support, in respecting your right to choose, and in demonstrating their unconditional love for you;

how much your daughter loves you;

how I hope my son is able to tell you how deeply he loves and respects you, but that if he cannot find his way to speak of his emotions, that you will trust me when I say that he does;

how I will always tell our grandchilden how much love their Grammy has for them and how much joy they have given you.”

And then, at a later date, when the end was drawing near, I sent:

“A Heartfelt Message”

You have given our family a precious gift—YOUR DAUGHTER.

Your kind and gentle nature lives through her.

You have instilled in her the values of  love, patience and honesty.

And so it passes—from mother, to daughter, to granddaughter.

Strong women, all.

 

I can only hope that these words somehow helped.  I think they are what I would like to hear.

Barbara Matthews

 

 

 

 

 

Again, Quality vs. Quantity of Life

In an AgingCare.com article, May 08, 2014, Coy F. Cross discusses “Quality or Quantity of Life?”   Visit http://www.agingcare.com
Home » Blog » Life as a Caregiver » Articles » Quality or Quantity of Life?

Another “hard talk” Carol and I had before her diagnosis with ovarian cancer was the need to balance quality of life and quantity of life. Both chemotherapy and radiation can have profound side-effects, some immediate, but gradually dissipating, others causing permanent damage.

How much quality of life are you willing to give up to live longer?

I remember talking with my dad, over his kitchen table, as he was considering high-risk bypass surgery to correct congestive heart failure. He was no longer able to fish or garden, two of his great joys in life. He asked what I would do and I replied, “If I could no longer do the things that brought me joy, I would have the surgery.” He opted for the surgery, had a stroke during the operation, and made his transition a few weeks later.

Carol and I talked about my dad and what we would do in a similar situation; we both agreed, “I would have the surgery.” So even after she opted for surgery and chemotherapy to treat her ovarian cancer, she always had the option, “if this becomes too painful or the residual effects take away my quality of life, I will stop the treatments.”

Discussing these difficult circumstances before the crisis arises makes your decisions and your acceptance easier when decision time comes.

My response:

Quality vs. Quantity of Life is very much based on personal value systems. There is not one “right” or “wrong” belief, and convictions on both ends of the continuum demonstrate personal strength. The topic is broached in my book, “What to Do about Mama?” Following is an excerpt from pp 159-160:

During one office visit, my mother-in-law’s doctor said that she was in very poor condition, and that if she was not cognitive, it would be obvious what step to take next (no treatment). He then continued by saying that since she was cognitively intact, decisions about treatment were completely up to her—the lady who opted to take every recourse available because she wanted to live to 100 and had stated, “I don’t want to miss anything.”

I recall another assessment I administered with a woman well over 90. She told me a story about her marriage. She had wedded a much younger man and had her only son later in life. It was ironic to her that her husband had preceded her in death. She said that her son was a widower and remarked that I reminded her of her deceased daughter-in-law. Later in the assessment, she asked me, “Are you married?” Afterward, when I was walking to my car, I burst out laughing when it suddenly dawned on me that she was exploring my status of availability for her son. I think it was important for her to know he was taken care of before she was ready to depart this earth.

And here is another reason one senior is motivated, just like the Energizer Bunny, to keep going and going and going . . .

Her mother hadn’t “planned” to live past 85. But once Patricia’s siblings began to compile a family history, she expressed the desire to see the work completed. It gave her satisfaction that her children, who hadn’t always gotten along, were cooperating on the project.

Conversely, I met other clients who lost their motivation to continue living. They stopped eating and were diagnosed with “failure to thrive.” This type of situation was often an enigma to the children and certainly put them in a quandary about decision making.

According to current medical standards, it is important to follow the individual’s wishes. I wonder, however, how many times people’s lives are extended not because of the parents’ choice, but because of the inability of children to let go.

At the end of his life, Marianne’s father had a stroke. But he was able to indicate that he didn’t want extraordinary measures. The family brought in hospice for his care.

Nathan’s sister, the nurse in the family, had trouble accepting the concept of eliminating anything that would prolong her father’s life.

Julie advises families to discuss—ahead of time—such issues as heroic efforts and sustaining life if there is little or no quality of life.

I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that “no extraordinary measures” be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.

Barbara Matthews

A Controversial Issue Worthy of Comments

The following article was written by:  Carol Bradley Bursack, Expert Author, speaker, columnist and eldercare consultant and was taken  from AgingCare.com, http://www.agingcare.com
Home » Caregiver Support » Tough Issues » Articles » Assisted Suicide and Elders: How Far Would a…

I have included the entire article as an addendum to my original post:  The Conversation Project from 2-11-14.  At a later date I added a comment to that post, which, I suspect, got “lost in the sauce,” so to speak.  The comment was about the court case against Barbara Mancini, referenced in Bursack’s article below:

Assisted Suicide and Elders: How Far Would a Loving Caregiver Go?

Assisted suicide—illegal in all states except Oregon, Washington, Montana, Vermont and New Mexico—has recently been in the news because of the court case against Barbara Mancini.

Mancini is a Pennsylvania nurse who was accused of helping her father, 93-year-old Joe Yourshaw, commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die.

Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.

What if?

My mother, during her last two years of agony, would often a look at me as say, “Can’t you just give me a little black pill? “It was obvious to me what she meant and, of course, all I could say was that I couldn’t do that, but I would do everything possible to aid her comfort.

Yet, her pleading nearly broke my heart.

Mom had some mild memory loss at the time, but not Alzheimer’s disease or severe dementia of any kind. I had the Power Of Attorney over her health, though my whole family was consulted on all important issues. Early on, Mom had opted for a do not resuscitate code and, as a family, we supported her choice.

It wasn’t until doctors determined that Mom would likely die within six months that she was able to receive hospice care, which then opened up opportunities for better pain relief. I will always remain grateful to hospice for my mother’s improved quality of life during her last months. When her time came, Mom died peacefully and with dignity.

What if I couldn’t have secured hospice care for Mom and she had continued to beg me to free her from pain? What if I had the legal option that would enable me to honor her request? It was obvious that she was slowly dying anyway. Would I have helped her by supplying medication that she could, at will, use for a lethal overdose?

I’m not certain what I would have done, and I am grateful that I didn’t have to make such a choice.

I do know that years earlier, when she showed signs of colon cancer, I respected her wish to not take the tests any farther. She rightly told me that she couldn’t withstand the tests, let alone the surgery, so she didn’t want to do anything.

I simply said, “Whatever you want to do, Mom, I’ll support you,” and that’s what I did. She lived over seven years after that conversation, much of it in excruciating pain from various causes. Her dementia worsened as well. I’ve never had regrets about supporting her choice.

Whether or not her life was more painful or less so because of her decision, we’ll never know. She may have died years earlier on the operating table, or she may have had the surgery and lived with less pain those last years of her life. All I know is that she made her decision and I supported her. The whole family did.
When I think of what people must go through to be certified to legally accept help in dying, I’m not certain that she had the energy to go through that process, even if it had been lawful at the time.

A difficult decision, and a long process

In most states where assisted suicide is now legal, the person wanting to die must be interviewed by multiple psychiatrists and, of course, already be within a certain closeness to death. It’s not an easy process.

It’s also not likely an option for people with Alzheimer’s or another dementia since, by the time the disease brings them to the brink of death, they would no longer be legally qualified to make such a decision, due to their brain disease.

Even if people with dementia leave their designated Power Of Attorney for healthcare with specific instructions to help them commit suicide once they reach a certain stage, the ill person would no longer qualify for legally assisted suicide at that point, since dementia would be deemed to be clouding their judgment.

Some cancer patients, those with ALS (Lou Gehrig’s disease) and others who have diseases that will bring certain death, but won’t cloud their judgment, may consider the choice to end their lives at an earlier stage than natural death would allow. The point of the law is to mandate whether or not a chosen person can assist them by supplying the means.

Hospice and healing

In most cases, hospice care erases (or at least makes bearable) any physical suffering, though there are exceptions.

Hospice, however, does much more than just assuage physical pain. The program also offers spiritual counseling for the dying person and support for the family. This assistance can sometimes bring even splintered families together during this transitional time. While I’m aware that some hospices are better than others, my support for hospice is unwavering.

Sadly, as in the Mancini case, it’s not just physical pain that may exceed the ability of hospice to control, but the emotional and mental stress that, for some people, is too much to bear. That is when—I would imagine—assisted suicide becomes a consideration for some.

What happens after death?

In my opinion, some of the emotional turmoil about assisted suicide stems from each person’s perspective on what death is. If a person feels that the end of physical life is the end of everything, it seems to me that it would be harder to die than if a person believes, as I do, that the spirit lives on.

Obviously, I have not personally been in this spot, though I may one day face such a dilemma. What would I want my loved ones to do? My healthcare directive is clear that I don’t want to be kept alive under extreme circumstances. However, I wouldn’t want my loved ones to have the burden of deciding whether or not to help me commit suicide.

Just what is assisted suicide?

Assisted suicide is not euthanasia. The person assisting is providing the means, but the patient commits the act that takes his or her life. Still, assisted suicide is, by definition, assisted. Someone, be it a physician, friend or family member, supplies the dying person with the requested method used to commit suicide.

How far should a caregiver go in supporting the wants and needs of a beloved spouse or parent – or even their child – when the requested support may hasten death? The answer to this question will be debated for years, and no doubt more court cases like Mancini’s will be heard.

To some, Barbara Mancini is a hero for following her father’s directions and giving him his bottle of medication. With that in hand, he could decide when and if to commit suicide. To others, she is a criminal because she didn’t protect him from himself.

I suspect few people consider these issues more than those who care for suffering loved ones nearing death.

What would I have done in answer to Mom’s plea if hospice care hadn’t been enough for her and assisted suicide had been legal? I don’t believe I could have given her the means to die, but I can’t say for sure. I’m thankful that I didn’t have to decide.

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