Archives: January 2012

I love listening to life stories.  As a hospice chaplain, I loved sitting with our patients and their loved ones engaging in what many hospice teams call: “life review.”  When did you meet your spouse?  When was Reggie born?  What is your favorite holiday?  When did you learn you were ill?  These are the types of questions asked when doing life review, and the stories come pouring forth.

Of late, Elizabeth and I have been listening to the life stories of Gen X individuals whose Baby Boomer mom or dad, stepmom or stepdad, died in the fall of 2010.  Each story is unique and beautiful, full of grace-filled surprises found in the midst of daily survival.  As they review the life of the parent who has died through the lens of caregiving and grieving, we catch a glimpse of how the first wave of the Baby Boomers is aging and dying.

Most Baby Boomers are fascinated by the project and actually volunteer to talk with me themselves.   I have to then explain that although I’m sure that their life story is fascinating, it’s really their story as seen through their children and stepchildren’s eyes that we are wanting.  So, in order to be a part of the project they would have to die.  Their eyes widen and they proclaim, “Die? What?!?!?”  Mortality seems anathema to many Boomers which should not surprise us since optimism has long defined this massive generation.  A recent survey conducted by the McKinsey Global Institute highlights the enduring optimism of aging boomers:

86% say that “I have always believed I deserve a good life.”

78% believe that they control their own destiny and can handle anything life throws at them.

Despite a robust, optimistic outlook, the Baby Boomers will soon live the adage: “time and death waits for no one.”  As they baby step into old age, our society will face the burden of the largest elderly population ever.  According to the Federal Interagency Forum on Aging at AgingStats.gov

“The baby boomers (those born between 1946 and 1964) will start turning 65 in 2011…The older population in 2030 is projected to be twice as large as their counterparts in 2000, growing from 35 million to 72 million and representing nearly 20 percent of the total U.S. population.  The U.S. Census Bureau projects that the population age 85 and over could grow from 5.7 million in 2008 to 19 million by 2050. Some researchers predict that death rates at older ages will decline more rapidly than is reflected in the U.S. Census Bureau’s projections, which could lead to faster growth of this population.”

Baby boomers will live longer and in greater numbers than ever seen before with few youngsters to support them financially and physically.  According to page 10 of The Coming Generational Storm, Kotlikoff and Burns, compute that “by 2030, the senior to kid ratio will be 3 to 1!”

What will ensure that the Baby Boomers have space and time to age gracefully?  Who will take up that mantle?  That our current healthcare system is less than adequate to support the needs and expectations of the “silver tsunami” of the Baby Boomers is far from new.  Volumes have been and continue to be written on how Medicare and the long-term care system need massive overhaul, and so I won’t enter that minefield.  My mind goes to the home.  I think of how as the boomers begin to age, they will need “informal” or “family” caregivers by the thousands.  “Informal caregiving” can be defined as “unpaid care given voluntarily to ill or disabled persons by their family and friends.” (For a good primer on informal caregiving, see the 1998 study on informal caregiving conducted by the US Department of Health and Human Services)  Informal caregivers assist a parent, friend or neighbor with completing normal activities of daily living ranging from driving, grocery shopping, taking medication, managing money, to even more personally vulnerable activities like bathing, dressing, using the toilet, or eating.

In past generations, a less debilitated spouse would tend to be on the front lines of caregiving, but there are a shockingly high number of single boomers.  According to the same survey of the McKinsey Global Institute, by 2015, 46% of all boomers aged 65 and above will be unmarried, creating 21 million unmarried households.  For the same age group in 1985, there were only 10 million unmarried households.  In an age marked by high rates of divorce, either the role of an ex-spouse will change or an adult child will be forced to move forward in line to act as the primary caregiver and decision maker for an aging parent.  Considering that already the most common form of informal caregiving relationship is that of an adult child assisting an elderly parent, the increased caregiving burden on Gen X and Millenials of the future will demand creative work, family, financial, and practical solutions that just don’t exist yet.

According to the AARP, most informal caregivers provide an average of 21 hours of care per week, so basically a part-time job.  They paint a picture of informal caregiving where caregivers assume responsibility for their loved one’s day to day care, triage any health care crises, absorb financial burdens big and small, and tend to underestimate how much time and how stressful being a caregiver will truly be.    As a mother of three, these observations sounded a lot like caring for a toddler.  It shouldn’t have surprised me then when their data showed that

“a typical caregiver in the US is a 46-year-old woman who works outside the home.”

Hmmmm…that sounds a lot like me and my friends in a few years…we have jobs, kids, friends, hobbies and parents…and my anxiety rises as I think about 2030!  How will my life story be changing?

Rosalynn Carter once said,

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

The next 30 years will be defined by the quality of care we provide for our elders.  How will the Baby Boomers age and die?  How are we as their kids going to care for them well and honor their memory and legacy?  What kind of lives will we review?

A terrific letter to the NYT editor today by Carol Levine of the Families and Health Care Project at the United Hospital Fund.

Hendrik Hartog’s Jan. 15 Sunday Review article, “Bargaining for a Child’s Love,” is a welcome corrective to the view that in earlier times families took care of their ill and aging members without expecting anything in return and without complaint. But Mr. Hartog himself has a too-rosy view of the current situation.

He says that today middle-class family members don’t do the work of “cleaning bedsheets, helping a parent into a bathtub, changing a diaper.” In fact, according to the 2009 National Alliance for Caregiving national survey, this is exactly what at least 21 percent of the country’s 48 million caregivers do, as well as managing complex medications, arranging transportation, financial and legal affairs, and countless other tasks.

Most insurance, including Medicare, does not pay for this “custodial” care. Only Medicaid offers some support of this kind, and private pay is extremely expensive. Moreover, families still fight over inheritances, whether they are large or small, tangible or sentimental. Human nature has not changed.

CAROL LEVINE
Director, Families and Health Care Project
United Hospital Fund
New York, Jan. 16, 2012

In healthcare, we often remind ourselves that the most stressful moments happen during transitions.  How you get from where you are to the ER, from the OR to recovery, from a hospital bed to home, from home to the doctor’s office, from the waiting room to the examining room, from your bed to the commode, from life to death…The sign of a quality healthcare provider can be seen in how smoothly they get you from here to there.

In the past few years, the Centers for Medicare and Medicaid (CMS) have begun to realize that our healthcare system is not structured to manage transitions well.  We rely heavily on the perseverance and strength of the informal caregiver, who tends to be the patient’s spouse, daughter, or neighbor, and who acts as home nurse, taxi driver, cheerleader, and comforter for the physically, mentally, and emotionally vulnerable among us.  These are people who know how to wait: they wait in the doctor’s waiting room while anxiously scanning the people around wondering what communicable disease will be their souvenir, they wait in the ER for admission, they sit in ER docking stations waiting to be seen while listening to the distress of those behind the adjacent curtain, they wait all night in hospital rooms in order to catch the doctor during the 5:30am rounds, they wait for tests, they wait for phone calls, and as they wait, they worry.

I’ve always been involved in the hospice spectrum of care which means that I enter at the end, and am chagrined to see that the model of care offered to the actively dying is one that is sorely lacking for the actively living.  We come to you, we talk to you at any time of day or night, we teach you, we sit with you, and we encourage and comfort you.  We do all this because it not only provides the highest level of care but also because it is infinitely cheaper than a hospitalization or institutionalized custodial care. It also allows us to be most attentive to the transition happening in front of us which helps us avoid the occurrence of more traumatic transitions, such as a pain crisis, ambulance ride, or hospital stay. Read More

I thought of Joan Didion as I sat in the waiting room of my eye doctor.  A woman in her 80’s came in the office and wanted to speak to the doctor’s assistant.  She explained, “These new glasses just don’t work!”  The young assistant smiled kindly but was distracted by all the other patients waiting for appointments.  She was an intrusion, and a loud and persistent one at that.  He finally sat next to her and explained that it takes a little time to adjust to a new prescription, that she should wait a week and then come back.  She rambled on about her old glasses; these new ones seem heavier and they shift differently when she reads, but she reads better with them on, so what should she do?  The assistant subtly smiled and sighed at the other assistants, and then repeated his same words about waiting a week.

I wanted to kick him and say, “Don’t you know getting old sucks!  You think she wants to be here, feeling nauseous from her new glasses listening to some boy who looks about 12 tell her to live with it for a week!  Our lives are our eyes and one day you’ll be old and you’ll be so thankful that some 12 year old optometrist doesn’t roll his eyes at you!”

I sighed and remembered Joan Didion, “and then she got old…”

Elizabeth pointed me to an article in this month’s The Atlantic by Caitlin Flanagan who writes a searing and heartbreaking critique of Joan Didion, her work and personhood.  In part, she writes in response to Didion’s newest memoir Blue Nights, which chronicles the particulars of the death of her daughter as well as the generals of her aging process, but she traces her overall exposure to Didion as a person and writer to show how “the writer’s work is a triumph—and a disaster.”

“Ultimately Joan Didion’s crime—artistic and personal—is one of which all of us will eventually be convicted: she got old.  Her writing got old, her perspective got old, her bag of tricks didn’t work anymore…

…But she belonged to all of us, to her girl readers, and we wanted her back in the airport, with the rental car turned in, and the mohair throw over her lap, and the portable typewriter propped on the chair so she could type the days notes.  We wanted her on the floor of the studio watching the Doors wait around for Jim Morrison to show up, and we wanted her on the set of John Wayne’s latest picture.  We wanted her to stay on the road forever.”

As I read her words an image of a young man carrying his dying father into a river came to my mind and my husband reminded me that it comes from the movie, and even better book by Daniel Wallace, Big Fish.  Quite a story and a quick read that chronicles a son’s experience of his father and his father’s aging and death.  He expresses the shock that Flanagan alludes to when we realize our heroes are mortals:

“Death has come for my father.  Dr. Bennett opens his eyes and stares into the wild, distant empty space before him, and I can guess what he’s thinking.  Edward Bloom!  Who would have thought!  Man of the world!  Importer/Exporter!  We all thought you’d live forever.  Though the rest of us fall like leaves from a tree, if there was one to withstand the harsh winter ahead and hang on for dear life we thought it would be you. As though he were a god.” (107)

And yet his father, despite his fantastical stories that claim otherwise, is indeed human and aging:

“…he has the look dying people get in their eyes sometimes, happy and sad, tired and spiritually blessed, all at the same time…His barely middle-aged body looks as if it has been dug up out of the ground and resuscitated for another go at it, and though he has never had much hair in the first place…what little hair he did have is gone, and his skin color is a weird shade of true white, so that when I look at him the word that comes to mind is curdled.  My dad has curdled.” (67)

As his father nears death, they admit him to the hospital, which becomes a place that is far more surreal than any story his father ever told:

“I sat there and waited and stared at those marvelous machines.  This wasn’t life, of course.  This was life support. This was what the medical world had fashioned to take the place of Purgatory.  I could see how many breaths he was taking by looking at a monitor.  I could see what his frenetic heartrate was up to.  And there were a couple of wavy lines and numbers I wasn’t sure about at all, but I kept an eye on them as well.  In fact, after a while it was the machines I was looking at, not my father at all.  They had become him.  They were telling his story. (171)

But machines and aging and even death do not define the life of one we love.  The story ends:

“…I carried him out of the car and down the mossy bank to the river and stood there before it, holding my father in my arms.  And I knew what I was supposed to do then but I couldn’t do it.  I just stood there holding his body shrouded in a blanket on the banks of this river…and all of a sudden my arms were full of the most fantastic life, frenetic, impossible to hold on to even if I wanted to.  But then all I was holding was the blanket, because my father had jumped into the river.  And that’s when I discovered that my father hadn’t been dying after all.  He was just changing, transforming himself into something new and different to carry his life forward…” (178-9)

And so, yes, we get old, but perhaps we will find that we are most real in the story of the person we want to be.  Someone will believe and the rest is inevitable.

Every admission to hospice care begins with a doctor’s prognosis put in order form.  “Within the best of my knowledge, this patient will live for 6 months or less.”  Without this order, no hospice.  And yet, many hospice patients die the next day and a rare few live for years.  A few days ago, the National Hospice and Palliative Care Organization released their annual Hospice Facts and Figures Report for 2011.  Although the number of hospice patients served in 2010 has stayed about the same, the median length of stay in hospice dropped to 19.7 days and the average length of stay in hospice dropped to 67.4 days.  For a benefit that was intended to be used for 6 months, we’re not doing too well and haven’t for quite some time.  Prognosis is hard.

End of life care hero, Dr. Joanne Lynn, has studied and critiqued prognosis for years.  Based on the seminal SUPPORT study, that followed over 10,000 seriously ill patients in hospitals across the country for several years, she writes in Handbook for Mortals: Guidance for People Facing Serious Illness, that

“nearly half of the patients died within 6 months of their enrollment in the study.  But the best medical predictions by statistical methods and by the patients’ doctors had trouble sorting out who was “dying.” One week before death, the average patient still had a 40% chance of living 6 months.  Even on the day before death, the average patient still had a 10% chance of living 6 months.” (9)

Well, the search for more reliable methods for predicting mortality and debility in general continue.  A new prognosis tool, intended for physicans, has been released and is open to the public, in theory, to use.  I tried it myself, but the age range for patient prognosis begins at 60, so I had to quit.  Rumors of its release have circulated from some time, Paula Span wrote about it and over 72 of the 75 people who commented on her blog said that they would want to use it on themselves or a loved one.  Of course, professional interpretation is needed, but you can try it. As you will quickly see, the results are based on current indices that already exist and that doctors should already use for when you ask, “How long do I have, doc?”

Will you use it?  Do you want to know?  How will this knowledge shape what care you want and how you will plan for your financial future?  What role should this tool play in your doctor’s care plan for you?  What if this site were sponsored by your insurance company?  How will Medicare or Medicaid use this information?  Not that I really want to now, but I wonder where Sarah Palin is?  I mean, the site has been created by a PANEL of physicians who are predicting DEATH…