Just finished Aging Well a fascinating book authored by Dr. George Vaillet who reflects on the findings of three groundbreaking prospective studies that assessed and interviewed individuals for 6-8 decades: 268 socially advantaged Harvard graduates born around 1920, 456 socially disadvantaged Inner City men born around 1930, and 90 middle class, intellectually gifted women born around 1910.  Every five years the individuals were interviewed at length in person, and every two years the individuals filled out comprehensive quantitative surveys and completed a physical exam.  Members of their family, such as spouses, parents, and children, were interviewed every five years as well.

The book is fascinating as a whole but their findings concerning what predicts successful aging that leads to feeling “happy/well” at 80 versus “sad/sick” at 80 really make you think:

For example, from page 13:

1)      It’s not the bad things that happen to you that doom you; it’s the good people who happen to us at any age that facilitate enjoyable old age.

2)      Healthy relationships are facilitated by a capacity for gratitude, for forgiveness, and for taking people inside.

3)      A good marriage at age 50 predicted positive aging at 80.  But surprisingly, low cholesterol levels at age 50 did not.

4)      Alcohol abuse consistently predicted unsuccessful aging, in part because alcoholism damaged future social supports.

5)      Learning to play and create after retirement and learning to gain younger friends as we lose older ones add more to life’s enjoyment than retirement income.

6)      Objective good physical health was less important to successful aging than subjective good health…It is all right to be ill as long as you do not feel sick.

Overall, people who don’t abuse alcohol and/or cigarettes, are good at reframing negative experiences, are in a stable love relationship, never stop learning whether that education be from school, books, new experiences, or their children, and can forgive, live not only longer, but better.

Of late, I have been interviewing adults who experienced the death of their mom or dad, stepmom or stepdad, about a year ago.  Interviews last about two hours, and I am amazed by how little I say.  The people who choose to be interviewed talk and I listen.  I am often surprised to learn that I am the first person they have talked to at length about the death of their parents or about how they are learning to live with the loss.  Every story of loss is painful to varying degrees but also quite normal.

This past week the editorial staff of The Lancet weighed in on the debate concerning eliminating the waiting period for diagnosing someone with depression after a death.  The DSM-5 will be released in 2013 and much discussion has occurred concerning making this change.  The Lancet believes we should not “medicalize” grief:

“Routinely legitimizing the treatment of grief with antidepressants “is not only dangerously simplistic, but also flawed,” says the unsigned lead editorial appearing in Friday’s edition of the influential international medical journal. “  Grief is not an illness; it is more usefully thought of as part of being human and a normal response to the death of a loved one.”

Grief and dealing with life-altering change, and struggling with that task, is normal.  Dr. Arthur Klienman goes on to say:

“The central problem is the lack of “conclusive scientific evidence to show what a normal length of bereavement is.” Drawing from his anthropological studies, he said that “across the world, societies differ greatly in what they regard as normal grief: some do regard a year as a marker, and yet others sanction longer periods – even a lifetime.”

Kleinman recounted his own experience of losing his wife of 46 years to Alzheimer’s disease in March 2011, describing the agitation, fatigue, weight loss and other symptoms that set in. It took 6 months before his grief lessened. Nearly a year since he became a widower, he continues to experience “sadness at times and harbor the sense that part of me is gone forever.”

“My grief, like that of millions of others, signaled the loss of something truly vital in my life,” Kleinman wrote. “The pain was part of the remembering and maybe also the remaking. It punctuated the end of a time and a form of living, and marked the transition to a new time and a different way of living.”

Although I genuinely wish there were a fix to grief, I agree that making grief an illness may take away a part of what makes us genuinely human.  When I read the opinions of The Lancet staff I am reminded that grief is not a source issue to be treated, grief is a symptom.  The source issue is that someone you love has died, and that source issue is terminal and sadly cannot be reversed.  The symptoms of that source will be great, but are not a sign of disease, they are a sign of your humanity.

A recent piece at the Journal of Palliative medicine reminded me of a conversation Elizabeth and I were having with one of my favorite palliative care physicians.  He is a student of yoga and although he doesn’t make direct connections between his religious practices and his medical practice, they bubble to the surface when he describes how he enters a patients rooms, how he conducts family conferences where he names painful elephants in the room (Momma is not going to get better…Your husband is dying…), and how he waits in silence to honor that stressed out people need time to process information and to honor the depth of the information that has been give.  When was the last time you sat in silence with your doctor?  I am reminded that when doctors are not paid on a fee-for-service model, they spend a lot more time actually helping us understand health and illness and not just throwing pills and treatments at us. Although I don’t think my friend would use the same words and definitions as Dr. Seno, I was inspired by her description of who we would like serving us in our times of distress and crisis.  She writes to medical professionals:

“So, how then do we be more of our  infinite selves?

…Infinite being is experienced in a quieter mind than we usually carry around so we have to find ways to have fewer thoughts. In the case of approaching death, we also have to find ways to reduce our  natural apprehensions.

Some nurses and doctors have told how they “get themselves ready” to enter a room where crises is going on. They “get ready” their state of mind. They know that all beings connect through consciousness. “We’re all in this together” so to speak. They honor their social obligation to be significant and authentic, and to express their caring as a personal gift of being infinite and available for their patients.”

Through a hospice newsletter, I learned that one of the pioneers in hospice care in Florida, Mary Labyak, died recently.  The hospice she led created a Memorial Page where visitors can go to read about her life and digitally sign a guestbook.  I am not her friend, in fact I have never spoken to her although I’ve heard her speak at conferences, but I left a comment of admiration and thankfulness for her years of service and her insight and heart for people facing the end of life.  It felt good to join the throngs of people whose lives she touched and to make public words of appreciation and sadness that she is gone.

Social media and grief.

On NPR’s Talk of the Nation yesterday, Bruce Feiler spoke about his recent piece on mourning and social media.  His quest began after he experienced several losses and he noticed that many times a person would send out a mass e-mail notifying every one of the news of a death, and he wondered, Is it okay to send an e-mail condolence?  If I write a note and mail it, they won’t get it for a week and they may think that I’m rude for not responding immediately.  The callers in to the show are pretty much all over the place from some benefitting from on-line support groups to others canceling their Facebook pages to protect their privacy.   But I liked Feiler’s conclusion:

“The number one lesson I learned working on this story and from my own experience losing friends and nearly dying myself was that you need to meet the sick person or the griever where they are…the job of the friend of the griever is – as someone told me as I was working on the story was my favorite thing that I heard – you need to be that person’s friend. And if that means showing up and, you know, repotting their plants and sweeping their front porch, then show up and do those things. If that means listening to same story about their loved one for the fifth time, then listen to that same story. And if that means just sitting there quietly on the other end of the phone as they weep, that’s what your job is. It’s not to impose your own wishes on that person, it’s to be where that person is, and be supportive in whatever way they need.”

On a plane today I sat across from a young man I first thought was actor, Omar Epps.  It wasn’t, sadly, but he was a fascinating guy, a college football player with his pinkie fingernail painted bright red.  I noticed it but in good German Lutheran fashion I remained noticeably obtuse while I internally made up all sorts of cockamamied reasons for said red nail.  Thankfully, the young woman next to him exclaimed, “Oh! You have a red fingernail!” He turned to me and queried, “You’ve been wondering about that too, haven’t you?”  I made like I didn’t notice such things and then, nodding, said, “Yeah.”

It’s for my mom.  She died in ’93 and always painted her fingernails bright, shiny red.  She was from South Africa and was amazing.  Ever since then I paint my pinkie red so I feel like she’s always with me.

“That’s beautiful,” the young woman next to him said quietly.

“I’m sorry for your loss,” I offered.

“Thanks,” he replied to us both, “that means a lot.”

I wanted to stop at that moment and say to them, “Look!  Do you see what just happened?  We created community!  If we had our complimentary drinks and pretzels, Bruce Feiler might even call this an airplane shiva! We didn’t need Facebook or our phones that have been forced into airplane mode to connect to each other.  Beautiful.”

Mourning and grieving in an age of social media. As Feiler says, be a friend.

Yesterday’s New Old Age blog raises an important issue that is up before the Department of Labor again which is including the home health aide profession under the Fair Labor Standards Act. Personally, I don’t believe we can pay the people who play this very important role enough, and if they are hourly, non-exempt employees they should be paid overtime.  Home Health Aides are the individuals who enter your home or hospital room or nursing home room and give you a bath, change your sheets, provide mouth care, wash your hair, help you toilet, and feed you a simple meal.  On our hospice team, it was clear to every member of the team from the physician to the accountants that every family we serve would trade us all to keep their home health aide.

One point of clarification that Span mentions has come up in comments about this issue before is ow we pay for overtime for people who are basically on stand-by or are sitting.  I do want to be clear that being a sitter and a home health aide are different professions, although some home health aides can be sitters.  In terms of sitter pay, which is also fairly abysmal, I would suggest paying as many places do for on-call staff.  We would pay a small hourly rate (like waitstaff) plus additional per task payments, usually based on visits, but could be expanded into hands-on tasks for a sitter.  A sitter could be expected to provide a certain number of task or responsibilities as well as be paid a triage rate when any problems or crises arise.

The deadline for commenting to the Department of Labor is February 27th!  Make your voices heard since these will be the people bathing and feeding and sitting with us!

This month the Journal of General Internal Medicine highlights a recent study of geriatric conditions in homeless individuals aged 50-75 in and around the Boston area.  The study shows that when the elderly become homeless they tend to become chronically homeless and that they experience a decline in mental and physical abilities comparable to individuals twenty years older.  Dr. Margot Kushel offers a thoughtful editorial on how some creative solutions could both be cost-effective in the long run, treat the elderly homeless humanely and, perhaps, bring an end to chronic homelessness.

“The average age of individuals experiencing homelessness is rising. Between the early 1990s and 2003, the proportion of homeless adults aged 50 and older increased from 11% to nearly one-third1. This trend continues. Demographic research has shown that for the last 20 years, adults born in the second half of the “baby boom” (mid-1950s to 1964) have experienced a sustained elevation in their risk of experiencing homelessness2. As this population ages, so does the average age of the homeless population…Widespread homelessness has persisted for 3 decades, but the face of it has changed. With the specter of large numbers of frail, older people living on our streets, there is a moral imperative to intervene. In light of a poor economic climate that may both place more vulnerable older individuals at risk of homelessness and threaten the safety net that cares for them, demographic projections of a continued rise in the proportion of homeless adults who are over aged 50, and compelling data describing the frailty of this population, we may have an economic incentive to do so as well…Read More…”

Yesterday’s NYTimes reported on the ongoing work of the American Psychiatric Association to revise the Diagnostic and Statistical Manual of Mental Disorders, or D.S.M.  One contentious issue has been the debate over whether or not to include or exclude grief or bereavement in the clinical diagnosis of depression (it is currently excluded).  This is not to say that you can not be grieving when you are diagnosed as clinically depressed, it just means that if loss is the only precipitating event to symptoms of depression, than other interventions are tried before a diagnosis and treatment plan for clinical depression are made.

“Under the current criteria, a depression diagnosis requires that a person have five of nine symptoms — which include sleeping problems, a feeling of worthlessness and a loss of concentration — for two weeks or more. The criteria make an explicit exception for normal grieving, which can look like depression.

An estimated 8 to 10 million people lose a loved one every year, and something like a third to a half of them suffer depressive symptoms for up to month afterward,” said Dr. Wakefield, author of “The Loss of Sadness.” “This would pathologize them for behavior previously thought to be normal.”

To show my hand, I fall in the camp that continues to exclude grief from the clinical definition of depression.

Well, if reading about Medicare Advantage Plans was not exciting enough for you, check out my newest piece up at HuffPost on Ritual and the Hunger Games trilogy.  Yes, the books are like Pixie Stix for your brain, but come on, who doesn’t love Pixie Stix!!

I read an interesting article from Dr. Richard Leff, an oncologist, who raises some critical concerns about gaps in coverage for elderly cancer patients who enroll in Medicare Advantage Programs.  If you are wondering what Medicare Advantage programs are, see here for a quick overview, but basically, the elderly can enroll in an Advantage plan which will often cover such things as dental or eye care, but the deductible, co-pays, and as Dr. Leff points out, the co-insurance may vary dramatically from traditional Part A and B Medicare. As a side note, when you enter hospice care, you always revert back to traditional Medicare–I’m not sure why, but it does make billing a lot easier for hospice organizations, which I am fairly confident is not the reason that it reverts but is a nice side effect for hospices.

Dr. Leff highlights the problem:

“While the stress associated with a cancer diagnosis and treatment is severe, in many cases patients and families are subjected to the additional stress of unexpected insurance gaps that leave them with unimaginable and unmanageable bills. In some instances, this problem may actually prevent patients from receiving optimal care. Yet, we as oncologists and our national organizations do little or nothing to help patients prevent this serious problem. Nowhere is this issue more apparent than in the growing Medicare Advantage plan arena. Dental care and vision care are wonderful, but how important are they if the plan you joined only covers 70% of the cost of your cancer care…

Unfortunately, otherwise well informed people who would never take the risk of Medicare part B without a Medigap policy, are now moving toward Medicare managed care products unaware that they may be facing 20 to 30 percent coinsurance costs for expensive outpatient therapies including chemotherapy. But not all Advantage programs are equal and the best have much more comprehensive coverage for outpatient therapies. In addition the information about the coverage is available if you really want to find it, thanks to a great effort by Medicare to require full plan disclosure. So why do people make the decision to join a less comprehensive plan? Because Medicare Advantage plans market the immediate availability of wellness services (which are also important) that a member can use right now and don’t proactively point out the gaps that may exist should members be faced with a serious illness.”

Now, there is a small cynical side of me that wonders if he is having a hard time billing for expensive treatments which is why he is raising this concern, but I’m going to fight giving into that cynicism.  His words are a good reminder that we should all shop around for our insurance policies, especially when I am learning that even for those enrolled in high deductible/health savings account plans, which typically cover at 100% after the astronomically high deductible is met are starting to incorporate co-insurance.  If co-insurance, co-pays, deductibles, confuse you (which if they don’t, you are Einstein!), check out this helpful video.

If you are a loved one supporting someone contemplating enrolling in a Medicare Advantage Plan, definitely check out the terms for the co-insurance and I would talk to your oncologist if you have a history of cancer.

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?

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…