Archives: Aging, Disability, Death, Dying

In yesterday’s NYTimes, Kumiko Makihari reflects on her fear being found several days after dying alone and the fracturing of the family and communal systems that once would have allayed this fear. She reflects on a popular Japanese novel that sounds fascinating and sadly, quite timely.

“Japan’s bewilderment as it faces the fraying of traditional family roles is cleverly chronicled in a popular novel, “Death-at-Seventy Law Passed.” The story takes place in Tokyo in 2020. The main character is a housewife exhausted from caring for her bed-ridden, elderly mother-in-law who ceaselessly berates her. The rest of the family members are equally unsympathetic. The husband believes that financially supporting the household absolves him from any other duties; the self-absorbed adult daughter steers clear of her mother to avoid having to pitch in, and the grown son who lives at home rarely leaves his room after being traumatized by losing his job.

They are all familiar types to Japanese today. We are like them ourselves or know people like that. In the book, the government is about to pass a law that would require everyone to be euthanized when they reach the age of 70. The story opens with the housewife fantasizing about how free she will be when the law forces the death of her mother-in-law.”

And Americans worry about death panels and health care rationing!

But as I read her words, and granted I am a ritual theory junkie, I just kept hearing J.Z. Smith harp at me, “She’s worried about liminality, Amy!  We’re always worried about liminality!”  What happens when we enter this world and when we leave?  Moments of mystery and deep sacredness lie in the places where we cross over, where we become and where we cease to be.  In her reflections I sense that as I peeks at the threshold of death we will all inevitably cross, she imagines that having a hand to hold at the horizon of existence would be nice.

But perhaps there is more in her worry that being alone.  Competing with Smith’s grouchy voice in my mind is the imagined voice of Willy Loman’s widow shouting at his grave, “Attention must be paid!”  Not only do most of us not want to be alone, but we’d like for our existence to matter, for attention to be paid.  When we cease to be, we’d like to think that someone will care.  Our moments of liminality should be noticed, honored, and felt.

But then again, perhaps, Makihari is simply a realist.  As Elizabeth has pondered aloud to me many times–a society that now “bowls alone” will eventually be a society that dies alone.

Kodokushi: a lonely death.

Yesterday’s NYTimes offered an op-ed from writer on Baby Boomers and heathcare, Susan Jacoby, on the importance of advanced directives, whatever those directives may be.   She chronicles the last year of her mother’s life and makes some insightful.

“There is a clear contradiction between the value that American society places on personal choice and Americans’ reluctance to make their own decisions, insofar as possible, about the care they will receive as death nears. Obviously, no one likes to think about sickness and death. But the politicization of end-of-life planning and its entwinement with religion-based culture wars provide extra, irrational obstacles to thinking ahead when it matters most.

As someone over 65, I do not consider it my duty to die for the convenience of society. I do consider it my duty, to myself and younger generations, to follow the example my mother set by doing everything in my power to ensure that I will never be the object of medical intervention that cannot restore my life but can only prolong a costly living death.” Read more…

So I started thinking last week of how patients and caregivers searching the internet for healthcare information will change not only the patient/physician relationship but also how the physician creates a treatment or care plan for us or our loved ones.

A recent Pew Report shows that 59% percent of adults search the internet for health information, making that activity (searching for health information) the third highest ranked on-line activity behind checking e-mail and general search engine use. The report traces the profile of those who tend to seek health information on-line, and caregivers outstrip them all:

“The word “caregivers” is used throughout this report to refer to people who, in the past 12 months, have provided unpaid care to a parent, child, friend, or other loved one. Unpaid care for an adult may include help with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Unpaid care to a child includes care for an ongoing or serious short-term condition, emotional or behavioral problems, or developmental problems.

Seventy-nine percent of caregivers have access to the internet. Of those, 88% look online for health information.

Caregivers distinguish themselves in this study as people focused on health information. They outpace other internet users when it comes to researching every single health topic included in the survey, often by double-digit margins.”

However, the profile is quite extensive in terms of college-education, access to broad band, generation, etc. The one page synopsis can be read here.

But what benefit does searching for and finding health information on-line have?  Any?  Dr. Natasha Burgert, a pediatrician, writes an insightful piece last week about how to use on-line health information with your physician.  I am not sure if this term was coined by her but she explains how doctors can be wary of “cyber-chondriacs.”  Her term resonated with me since I’ve seen in hospice how there is something so suggestive in the human brain that inevitably everyone on the team presumes that they are dying of something simply because we are always exposed to people dying of something. I have a headache, so I naturally presume I have mesothelioma despite the fact that I have never been exposed to asbestos and have no reason to believe I have cancer and a simple ibuprofen takes care of the problem.  I guess this could be called a reverse-placebo effect where merely learning about diseases leads you to believe you have them. Cyber-chondriacs.

At the end of the day, Dr. Burgert thinks we just need to use good judgement, which I agree with and think is a wise course of action but I also smile.  Wouldn’t it be lovely if we could be prescribed “good judgement” like we are prescribed antibiotics?  Tell me there’s not someone in your life who couldn’t benefit and be so much healthier with a steady dose of good judgement.  I’d sign up for that trial any day!

I spoke to a class of nursing students today about changing family structure and how the shape of your family may shape how you make healthcare decisions for a parent or stepparent, what type of caregiving role you are able or choose to play for your parent or stepparent, and ultimately how both shape, and yet may not define, not only how you grieve those who are parents to you but also the story of your life.

All the students in the room would be considered Millenials in their early twenties.  We drew our families and we analyzed how our family systems would respond in a crisis.  Imagine you receive the call, “Amy, the doctor says I have cancer…”  What happens next?  How does everyone in the system respond?

I did a role play of how I have heard and how I imagine the first response going. “What?! Hold on…Tell me exactly what the doctor said…”… in the background I am madly typing on my laptop… “Exactly how is that spelled…Hmm, mmm…what stage did she say?  Okay hold on, let me read this and I’ll call you right back…”

Everyone in the room laughed in recognition.  We talked about care plans—as good nursing students they nodded in recognition that care plans are king/queen in the world of healthcare.  In this day and age, the care plan has started before many of those involved in carrying out the care plan have even talked to a health care professional!  I was thinking about this cultural shift in our response to a diagnosis as I read an article at Reuters.com on whether or not oncologists sense family conflict.

“Siminoff and her colleagues interviewed 134 advanced lung cancer patients living in the Midwest, their oncologists and their primary caregivers.

The patients and family members were asked separately how often they disagreed on decisions about treatment — such as whether or not to get extra tests and options for hospice care. Researchers surveyed the doctors on how often they perceived differences of opinion between patients and caregivers.

About 71 percent of the time both the patient and caregiver said there was no conflict between them, and 11 percent of the pairs agreed there were some problems.

Most of the time, doctors correctly reported there were no conflicts between patients and caregivers.

However, in the 17 cases when a caregiver alone reported some type of conflict, the oncologist picked up on it only five times.

Similarly, of the seven cases when only the patient reported conflict with a family caregiver, the oncologist recognized it just two times.

And in the 15 instances when both the patient and caregiver reported there had been conflict, the oncologist again agreed twice.”

The physicians interviewed for the piece defend themselves by explaining that they are not trained to assess for conflict but they can have a social worker or therapist on call to do so.  I took issue with this explanation since the questions about conflict that the researchers ask relate to the care plan, not to the issue of addressing relational conflict.  All families have some level of conflict and yes we do not need oncologists trying to intervene, but if there are conflicts occurring that relate to how to proceed with a treatment or hospice, then I definitely want my oncologist to notice and address the conflict.  Especially in a day and age when the likelihood that my family members have all been on the internet researching all sorts of sites learning about this or that cancer and the respective treatment plans.  We may all have just enough knowledge to be dangerous and we need the experts to notice our conflicts and address them with sound knowledge and case-specific guidance.

I don’t envy them.  Being an oncologist is hard enough.  As a layperson it boggles my mind that within my lifetime cancer is no longer an immediate death sentence but often can be treated as a chronic illness for many years.  Amazing.  Also in my lifetime, the role of laypeople in medicine has changed and continues to change in drastic ways.  Laypeople are empowered to know and understand disease in ways never before imagined.  How will this access shape how care plans are created and carried out in the long run?

I was reading Slate yesterday on the death of Murray Lender of frozen Lender’s bagels.  The title of the piece references the power of mediocrity.  The author argues that at times people want cheap and easily accessible over high quality.  He closes by opining:

“The fundamental story of Lender’s Frozen Bagels is that the winning product isn’t always the best one. Like Ikea for furniture, H&M for clothing, or the Olive Garden for Italian food, Lender’s innovated by finding a way to compromise on quality and reap huge gains in other spheres. To an extent, it’s thankless work. Nobody wants to stand up and proudly proclaim, “I changed the world with my inferior products.” But often this is how the world changes. And if you look at the health care and higher education corners of the American economy where spiraling costs are bankrupting the middle class, you see sectors that are largely untouched by this kind of low-end innovation. The world could probably use a few more Murray Lenders.”

I started wondering…what does a world look like where googling WebMD becomes a formalized part of my care and treatment plan?  With the rise of high deductible/health savings account, we already question our doctors as to how they are coding are visits (you better be coding this as a well visit!  I don’t care if my arm falls off, I’ll let you know when I want you to assess me for a problem!) and will negotiate for prescriptions for generics.   I have an ominous feeling that this is just the tip of the ice berg…

A insightful post by Michael Hodin, the Executive Director of the Global Coalition on Aging, is up at HuffPost.  He critiques our current budget plans by pointing out that we need to focus on healthy aging and employing an older workforce in order to reduce our dependency ratio.  I hope someone is listening.

This recently released report in The Gerontologist is blowing my mind.  Titled “Baby Boomer Caregivers: Care in the Age of Individualization” the report interviewed 39 Baby Boomer caregivers in Quebec.  The authors use the term “the denaturalization of caregiving” to describe a phenomenon they see where individuals are consciously juggling multiple, distinct identities in an age when a sense of familial responsibility is waning.

“Notably, the women we met with call themselves ‘caregivers’ and not simply wives, daughters or mothers, indicating that the work of caregiving no longer falls within the realm of ‘normal’ family responsibilities.”

On a side note, I am wondering if my kids would accept calling me caregiver instead of mom…

On a deeply troubling note, the authors find that for baby boomers their sense of caregiving responsibility rests on their perceived quality of the relationship.

“The baby-boomers in our study appear to have a new conception of care whereby the documented, negative consequences of caregiving such as poor mental and physical health, sacrificed personal and family life, or impacts on employment, are no longer considered legitimate. This conception seems to have arisen in parallel with changing notions of family solidarity. Norms of solidarity are becoming less prescriptive, leaving room for an interpretation of family obligations that increasingly depend on many factors. These include the types of interpersonal relationships one has with the person requiring care, one’s availability to care, one’s family’s situation, and so on. In other words, you are only legitimately expected to care if you have a good relationship with the person needing care and if you have no conflicting commitments that take precedence over caring.” (emphasis mine)

Wow-ee.

I do not envy stepparents.  Granted, I am sure there are outliers: stepchildren who connect with their stepparents on a profound and meaningful level thus creating a relationship that runs as a constant thread of support and love throughout a lifetime.  Judith Wallerstein points out that these outliers do exist.  But the more that I listen to stepchildren and step-siblings reflect on their relationships with their stepparents and step-siblings, the Brady Bunch rarely happens, and any sense of obligation or loyalty tends to vaporize with age.  Once a roof is no longer shared, any sense of connection emotional or physical is no longer shared either.

My thoughts are just forming here but I think it relates to choice. In Blue Nights, Joan Didion reflects on the undercurrent of fear that seemed to run through her adopted daughter’s existence.  A fear of abandonment.  Even though she and her husband affectionately called her “the chosen one.” The title seemed to exacerbate the underside of that term: in order to be chosen, someone else did NOT choose her.   Didion cites as a mantra the anxiety that her daughter felt around the story of her adoption: What if you hadn’t picked up the phone when the hospital called?  What if you had gotten into an accident on the way to get me?  What if…?”  At one point she reunites with her biological family which seems to unnerve her as the two worlds, or two stories, of her life collide.  She decides to cut that story out, although Didion notes that one of her sisters sends flowers at her death.

Stepparents don’t choose their stepchildren, but they do choose how they will relate or not relate.  In this week’s Dear Judy, a stepdaughter asks what choice she should make in attending or not attending her stepfather’s funeral.  A hard choice to make.

“Dear Judy,

My stepfather just died. He was very good to me when I was growing up, and I appreciate that, paid for my high school AND my college (my mother was jobless and also a drunk, to be honest).

Then he divorced my mother and remarried. I couldn’t bring myself to forgive but not because he left my mother. He also left me. I never got a phone call or even a birthday card after they split up.

So now he’s dead, and everyone thinks (even my mother) I should pay my respects, go to the funeral which is in two days’ time and visit the widow.

I am torn. I have great memories and bad ones. Christmases without even a small present, and birthdays with no note or e-mail. And lots of phone calls (from me) that went unanswered.

I can’t decide. Should I go and say how sorry I am?

Lorna”

Judy says its her choice.