Les Morgan

"Go Wish" Cards for Advance Care Planning

One of my favorite tools for Advance Care Planning discussions is the Go Wish card "game" provided by the nice folks over at the CODA Alliance.  The cards were developed by hospice physician Elizabeth Menkin, M.D., based on review of the literature on what issues are most important to real people who are faced with end of life decisions.  The items on the cards were derived in part from results of a survey reported by Steinhauser, K. E. et al. "Factors Considered Important at the End of Life by Patients. Family, Physicians, and Other Care Providers." JAMA. 2000;284:2476-2482

I'm such a fan of these simple cards that I did a podcast with Dr. Menkin explaining how the game works, using myself as the guinea pig.  You can listen to my own advance care planning discussion with her explaining how the game works: (download podcast, mp3, 40:32).  If you have questions about anything in that podcast, send me a tweet.

The game is a set of 36 cards, each with a short statement of things people often cite as being important to them in the last weeks or months of life. The format is similar to playing cards, and referring to it as a "game" helps make it less scary to think about the subject.  You can use the cards either in "solitaire" mode or with another person.  If you are an end-of-life professional such as a hospice or palliative care worker you can easily introduce the game to someone in just a few minutes.  I've found that people warm up to the cards quickly and have no problems using them to prime the pump in care planning.  Unlike filling out forms, the cards stimulate conversations that uncover values and preferences for end of life care.

Coda Alliance sells the cards to the general public and to health professionals. The cards have been extensively field testing in a wide range of settings, including community meetings, family gatherings, and in church lunch-and-learn groups. When exposed to the cards, people often want to have a set to take home so they can "play the game" with elderly parents or their young adult children, to help them prepare for their possible role as a health care agent.

The game is useful for social workers, health educators, or chronic conditions case managers meeting with patients and their loved ones trying to get conversations started about end of life care. Hospice social workers use the cards to stimulate discussions about what the patient still may hope for.

The starter game comes with two packs of cards in contrasting colors and instructions for using the cards individually or in pairs. Card packs may also be purchased in bulk.

Once you have had your conversation you can record it using an Advance Directive Form such as the California forms provided for free by CODA.

Les says "Check them out!"

Amazonfail: The Lone Gunman Theory

"I'm just a patsy!"
-- The French Guy

Ok, so now we hear that a single programmer's slip of the finger caused the massive Amazon fiasco.  I don't buy it. It's the Lone Gunman Theory of Amazonfail 

I've been in information technology for my entire career, and if I gave an answer like that to some of my past bosses I would have been fired.  What was wrong with the design of the system itself that permitted such an outcome?  The underlying logic of the database design may turn out to be the real villain, laced with dark assumptions about the ontology of sex.  I guess being gay just means being part of the larger Venn diagram of "adult things" which in turn falls within the larger circle of "upsetting things" which is further subsumed under "things that will frighten the horses."

I don't think the management at Amazon is evil.  It was a "glitch" that they are rushing to "fix".  Great.  Get it running again, and then do the post mortem, as we generally do in information tech circles when something goes really wrong.  But please, can we have some transparency during that next phase?  Can Amazon help us to understand what checks and balances will be put in place at a system level to reduce the chance of a similar error in the future?  We haven't had much transparency so far.  But Amazon could still turn this lemon into lemonade if they will only get off the dime and do more proactive communication.  For good comments on the PR problems check How to Weather a Twiiterstorm.

Why do I care about this?  Two reasons.  First, Growth House uses Amazon as its provider for online book sales.  If something fishy is going on, I need to know about it.  Second, one of the books that got de-ranked was The Mayor of Castro Street in which I my name is mentioned. You can find me in it by using the "Search inside this book" feature, one of the reasons why Amazon can be so useful when it wants to be. A little bit of my own past was being taken away, and I didn't like it.  Harvey always knew the value of being loud and pushy now and then. 

-- Les Morgan (14 April 2009)

Followup

I liked these blog items on Amazonfail that appeared after this post was written:

• Nathaniel Frank's What to Make of #Amazonfail (14 April 2009) mentions that it's still vague exactly how the tagging structures could have had such a disproportionate impact on LGBT content, suggesting internalization of stereotypes in the coding.
• Why Amazon’s Explanation Is None At All (14 April 2009)
• Mark Hannah (PBS Mediashift) on Fail: Not Using Social Media to React to #AmazonFail Meme (14 April 2009)
• Scott Esposito's Amazon Fail: The Aftermath (15 April 2009) gives details on how the systems actually work and raises concerns about Amazon's dominance of the online book market.
• Francine Saint Marie's Amazon’s "Glitch" Myth Debunked (16 April 2009)
• Amazonfail: How Metadata and Sex Broke the Amazon Book Search (20 April 2009)

We Love Each Other: An activity book for grieving children

We Love Each Other by Julie McLellan-Marino is a workbook for grieving kids aged 9 or 10 and older. It describes itself as "a healing journal for children" but I see it more as an activity book. The format is "hands-on" and encourages the child to draw, paste photos, and write stories as part of a supportive process of remembering the person who died, particularly a mom or dad. Providing a range of activity types is a smart move, since kids vary a lot in their preferred communication styles. The mix of journaling and expressive tasks has a good secondary goal of getting the child to tell their own story in their own way, which makes the child aware that their perspective is important and builds self-esteem. Sort attention spans are OK. You can do the pages a little bit at a time over several weeks, making it suitable for an ongoing bereavement group or drop-in session. I'm not sure how many kids would do the activities entirely on their own, but as a tool within the context of professional support it's definitely worth a look. It has been used by hospice counselors in classroom and bereavement camp settings.

It incorporates a dual-process model of grief. Loss-oriented coping is supported by evoking memories of life with the person who died and validating feelings ("all of your feelings are normal so let them out", "don't let any yucky feelings stay inside you and hurt you or your heart or your mind or your body or your spirit"). Restoration-oriented coping is supported by helping the child rebuild their sense of self within the new reality of life without the loved one being physically present ("if you feel mad shoot some baskets or hit your pillow and if you feel sad draw some pictures or let yourself cry").

Skillful grief support works to overcome denial of the reality of death while affirming the reality of the continual emotional bonds. Just because someone is dead does not mean that the emotional relationship with that person is over. On the contrary, absence can make the heart grow fonder. This book does a good job of saying that it is love that survives, not the literal parent. Language like "our LOVE survives," "I LIVE in your heart," and "my body died but my LOVE for you survived" reinforce the importance of the positive introjected parent, which can be a source of ongoing support for the child. This is an age-appropriate and mature approach. Some books on grief directed at kids take the easy way out by asserting that mommy or daddy did not really die, but just went away to heaven. That model of the invisible but surviving parent is too facile, and while it may be needed with some very young children it can fail to acknowledge the real loss the child is experiencing.

We Love Each Other is non-denominational and does not mention any particular religious views but frequently expresses the belief that who you are is not only based on the existence of your body ("for some reason it was time for my body to die", "my body died but my LOVE for you survived"). The absence of specific religious framing does not preclude its use within a religious setting, since the general message can be complemented by other messages about survival that fit a particular denominational belief system. But if you are looking for pictures of angels in clouds, there are none. The bright artwork features a lot of hearts and geometric shapes in cheerful primary colors.

What if you can't pay for a funeral?

In end of life care we often are faced with a question like: "My relative just died. We don't have the money to pay for a funeral. What do we do?" These situations are never easy, but here are some tips to consider when handling a request for funeral assistance. The good news is that you can make funeral planning choices that reduce expense, and perhaps get some modest financial help to cover some (but probably not all) of the costs. The bad news is that I personally don't know of any way to get the full cost of a typical funeral covered by public sources.

Before anything else, it's important to recognize that this is a common problem. In the United States, funerals are very expensive. The burdens of medical care may have already depleted family finances. It's not something to be ashamed of. Hospice professionals are used to these questions, and helping the family face stress after a death is part of the job of providing total family support. In hospice the unit of care is the family, and facing financial facts is part of the family dynamic.

Questions to ask

Here's my list of questions to ask. If you don't get what you need from one source, try another.

Was anything planned in advance? Funerals take time to arrange. If death is expected you or a family friend can do a lot of research up front. Anything you do to reduce the need to make decisions in a hurry usually results in a better outcome. In my experience if you talk about funerals with family members ahead of time, nine times out of ten people express a desire to go with a simple, respectful, and low-cost scenario. Having a conversation in advance can be a be help to the survivors, who sometimes overspend due to feelings of guilt, or just because they haven't considered all the options. Advance planning can be as simple as discussing wishes or as detailed as paying in advance for merchandise and services. Sometimes people ask for funeral assistance after they have already signed a funeral contract, which is the wrong time to be asking for advice.

Is there a family friend who can take charge of the financial planning for the funeral? Before you start calling, consider who should do the footwork. Try to get somebody who is not already overwhelmed with caregiving to do the shopping. Immediately after a death the family and close friends are emotionally in no condition to haggle over prices. This is the perfect time to enlist help from a detached friend who can comparison shop and help make rational spending decisions. If that's not possible at least take a friend with you before you sign anything.

Can you get a social worker involved? You may be eligible for social work services from more than one agency. If hospice care was being provided at the time of death, the first thing to do is to contact the social worker at the hospice where the death took place. The social worker may be able to make local referrals and guide you toward resources they know to be useful. If the death took place in a hospital, skilled nursing facility, or other type of residential facility, or if the decedent was on public assistance, there may be a social worker available as well. Most social workers will at least try to help, but not all have experience with this issue. I know of jaw-droppingly unhelpful conversations with social workers that leave me wondering how any institution with a high annual death count can't have a protocol for handling funeral assistance questions. Remember, social workers can't provide you with resources, they can only point you in the right direction so you can get the resources on your own.

Have you screened at least three different funeral directors? Funeral directors deal with these issues every day and can be very helpful in locating benefit sources. Crack the Yellow Pages and call at least three funeral homes in your area to ask what benefit sources exist in your area. This initial screening will turn up options you would miss if you just call one funeral home. Ask each of the funeral homes what your options are for a low-cost funeral. You will be surprised at the range of options to consider, all of which must be itemized as line items on a price sheet. That's required by law in every state, as far as I know.

Have you called your state, county, and city departments of Social Services? In addition to calling funeral homes directly to ask about benefit sources, call the Department of Human Services in your state, county, and city to find out if there are any funeral assistance benefits offered locally. Some localities have "indigent funeral" benefit funds and others do not. It's best to call all three offices because the local options may vary from the state baseline. There is no national Medicaid funeral benefit that I know of, but many states and counties do have some nominal Medicaid funeral benefit that can be paid if the decedent met certain qualifying conditions such as having been enrolled prior to the death. If any Medicaid or local funeral benefit is available, you may need to use one of the funeral homes on an approved list.

Was the deceased a member of any organizations and religious groups? You never can predict what these organizations offer in the way of support for members. Since calling around can take some time, this is a good task to do in advance of need. Some religious organizations have funeral committees of members who make a special effort to provide practical support at the time of a death. These folks are angels on earth, and can be of great help in doing the footwork necessary to obtain benefits. If you don't belong to any organization, you can try to find help from non-denominational organizations in your area. It's difficult to say what will be available in town, but your social worker or funeral director can be helpful in getting local referrals.

Was the person a veteran? If so, they probably are entitled to burial in a national cemetery and some other benefits such as burial honors. Call your VA office for details or check the Department of Veterans Affairs FAQ on Burials and Memorials. In certain circumstances, a Burial Allowance is available from the Veterans Benefits Administration. For assistance call 1-800-827-1000.

Was the person a child? Some funeral homes provide services for infants and children at reduced rates. Don't hesitate to ask about discounts for children. Some organizations such as Kids Wish Network have funeral assistance programs.

Does the family want burial or cremation?

This is the key question that will have the most impact on total funeral costs. Any benefit probably will not be enough to cover the full cost of a burial, but may cover the full cost of a cremation. Cremation is much less expensive than burial. With cremation you don't need an expensive container or urn The cremated remains can be returned to the family in a small box at no extra charge. Disposal of the remains can take place at little or no cost as part of a separate service. Check local laws to be sure it's legal to dispose of remains in the place you are considering. Disposal at sea or in a lake is popular in some areas. In my own case, I admit I'm biased in favor of cremation after my own demise. I would ultimately like to be mulched into the landscape (but hopefully not anytime soon).

There are several costs that add up when you have a burial. Expensive items include the cemetery plot, the vault or grave liner, the casket, the grave marker, and embalming. These cost are unlikely to be fully-covered by any public funeral benefit.

• Buying a cemetery plot is similar to any other real estate transaction. Think location, location, location. Prices vary a lot depending on which cemetery you use, and what part of the land is used. Does the great view really matter? Call several cemeteries and get price ranges. The cemetery probably won't give you a loan to buy a plot, so you need to come up with cash. There is also a secondary market for plots that may be worth looking into. Sometimes people buy a plot and then move away, divorce, or have other family changes and can't use the plot themselves. Some of these plots wind up on the market with independent cemetery brokers, or for sale directly by the owners. (Yes, you can buy a FSBO cemetery plot.) There isn't much of a foreclosure market on plots, so prices haven't fallen in line with home values, however.
• The casket can be a big-ticket item. Low-cost burial containers can look just as good as a fancy casket and make little or no difference to the long-term preservation of the body. A cardboard cremation container with a flag or beautiful cloth draped over it can look just as beautiful as any other funeral arrangement. If you have chosen cremation, this is certainly the best way to go. You can buy caskets from wholesale suppliers, but be aware that some funeral directors may resist this practice. Yes, you can get caskets at Costco, and no, you don't have to buy three at a time. Expedited shipping is available.
• If you bury a body in the ground, some cemeteries require that the coffin be placed inside another more solid solid box to keep the ground from sinking. This "outer burial container" may cost as much or more than the coffin itself. Ask for specific line item prices for this accessory. A "grave liner" will probably be cheaper than a "vault", and neither will really protect the body from decomposition in the long run. Remember that some cemeteries don't require anything at all (see "green" options, below).
• The grave must be marked with a headstone or other type of grave marker. What you can use is regulated by the cemetery you choose. Most contemporary gravesites use markers that are flush with the ground and have a limited range of design options. Above-ground raised markers (the typical "gravestones") can be quite expensive.
• It's cheaper to have a closed-casket funeral, or a memorial service later with no body present. Embalming and restoration are skilled services that need to appear as line items on your funeral bill. Embalming is generally not a legal requirement for a funeral but may be required to have an open casket viewing in some states.

Out-of-the box ideas

1. Use a mortuary school. This is like going to a dental school to get your teeth repaired. The funerals are handled by students with close supervision by instructions. The quality can be excellent and is generally much cheaper than prevailing retail rates. For a listing of moruary schools by state check www.mortuaryschools.com.
2. Have an eco-friendly "green funeral". Some of these "green" options will lower the cost of the funeral, such as not having embalming and using a biodegradable casket. Some funeral homes offer "green" services and others do not. When selecting a funeral home ask specifically how choosing sustainable options can reduce the price of the service. The Green Burial Council [888-966-3330, www.greenburialcouncil.org] offers good educational materials about green practices and has a searchable database of providers in the United States.
3. Handle some or all of the funeral on your own. Home funerals were the normal method of caring for the dead before funeral homes grew as a service industry. In most states the family or a religious group can perform most funeral duties, but some states require that a licensed funeral director assist with these home funerals to ensure compliance with local laws. Caring for your own dead can be a deeply loving experience for all concerned. The books Dealing Creatively With Death: A Manual of Death Education and Simple Burial (get the current edition) and Caring for the Dead: Your Final Act of Love both have information on ways you can reduce expenses by getting directely involved with some or all of the steps in conducting a funeral. Final Passages provides education about home funerals including CEU programs for professionals.
4. Donate the body to a medical school. This sometimes involves no cost to the family at all, or just the cost of transporting the body. In most cases the family will receive cremated remains back from the school within one or two years. ScienceCare [www.sciencecare.com] is a nationally-accredited tissue bank and body dontation program that can help you find an appropriate program.
5. Rely on the County Coroner for public disposition of the body. When people who are indigent and friendless die, each county has some process for caring for and disposing of the body. This public service is provided for persons who have no families or assets. If you call your County Coroner they can tell you what the local regulations provide for, and may be able to refer you to low-cost funeral options that they know of in their area. Since coroners deal with indigent deaths frequently that are experts in undertanding the problems.
6. Use videoconferencing to avoid travel expenses. Some funeral homes now offer web-based streaming video services to permit remote participation, either by coming to a local funeral home that is equipped with a video link, or simply by using the Internet.

For more information

The Funeral Consumers Alliance (FCA) is one of my favorite sources for information about funeral issues in general. Don't fail to read their Ten Tips For Saving Funeral $$$. FCA has been around for a long time and has a solid pro-consumer stance. Their web site is a gold mine of information on how to cut costs and improve quality of the final event. Their member associations provide a range of funeral-planning information and can help you find local resources. Some of their local groups do local funeral price surveys and some have negotiated a discounts for members at participating funeral homes.

The National Funeral Directors Association (NFDA) [http://www.nfda.org] has a Funeral Service Help Line at 800-228-NFDA (800-228-6332). They offers information about funeral planning and referrals to NFDA-member firms, as well as materials about grief. The Funeral Service Help Line cannot provide funding for funeral services. NFDA has a list of state funeral directors' associations to help you zero in on your area.

Update on California POLST Forms (Physician Orders for Life Sustaining Treatment)

Here's a recap of key facts about Physician Orders for Life Sustaining Treatment (POLST) Forms in California. As of October 29, 2008, the actual POLST forms have not yet been approved and posted. The Department of Public Health (http://www.cdph.ca.gov) is working on a detailed FAQ that will be posted on their web site as soon as it is available.

The following overview on POLST is based on information included in an All Facilities Letter Letter issued October 8, 2008, by the California Department of Public Health. The Letter applies to hospitals, nursing homes, home health agencies, hospices, and all other health facilities licensed by the Department. The Letter served as notice and a reminder to health facilities regarding the provisions of AB 3000 (Wolk).

Effective January 1, 2009, California will implement new provisions established by Assembly Bill 3000, Chapter 266, Statutes of 2008 with regard to the Physician Orders for Life Sustaining Treatment (POLST) form (Section 4780 - 4785 of the Probate Code). The POLST form seeks to help patients inform health care providers what life-sustaining medical interventions and care a patient would like to receive if they are frail and elderly or have a compromised medical condition, a prognosis of one year of life, or a terminal illness. It is designed to be an additional helpful statewide mechanism for a patient to disclose his or her wishes about a full range of life sustaining or resuscitative measures including comfort care, full treatment, antibiotics and artificially administered nutrition. It does not affect any of the currently recognized advance health care directives; rather, the POLST form is an immediately actionable physicians order consistent with the patient's wishes or best interest, if wishes are unknown.

The POLST form:

• is a standardized form that is brightly colored and clearly identifiable;
• can be revoked by an individual or their representative at any time;
• is legally sufficient as a physician order and not an advance directive;
• is recognized, adopted and honored across treatment settings;
• provides statutory immunity from criminal prosecution, civil liability, discipline for unprofessional conduct, administrative sanction or any other sanction to a healthcare provider who relies in good faith on the request and honors it;
• allows an individual with capacity to, at any time, request alternative treatment to that treatment that was ordered on the form, and
• does not require health care providers to use a POLST form, but requires that health care providers honor POLST orders.

Health care providers are required to treat a patient in accordance with the POLST form, unless the physician's order requires medically ineffective health care or health care contrary to generally accepted health care standards. In addition, a physician may conduct an evaluation of the patient and, if possible, in consultation with the patient, or the patient's legally recognized health care decision-maker, issue a new order consistent with the most current information available about the patient's health status and goals of care. The legally recognized health care decision-maker of an individual without capacity shall consult with the physician who is, at that time, the patient's treating physician prior to making a request to modify that individual's POLST form.

If you're confused by how POLST fits in with other forms such as Advance Directives and Health Care Proxies, listen to this Growth House podcast on Understanding Advance Directive Paperwork (mp3, 32:02). It explains various kinds of health care documents you may encounter.

Everybody Just Calm Down

This is a crazy time for the world economy.  Stress levels are up, portfolios are down.  My friends, we're in a mental health crisis as well as a financial crisis.  When Wall Street panics, we all get the jitters.

It's official!  Last week the World Health Organization said that the global economic downturn poses a serious threat to mental health.  The risk of suicide goes up when people are down on their luck   And its not just stockbrokers jumping out of windows.  Joe the Plumber, who was featured in the final presidential debate, may have trouble keeping his business open and his family fed.  The elderly and those on fixed incomes are particularly at risk.  And people who lose their jobs may lose their health care coverage as well.  It's bad to be broke, and it's bad to be sick.  But being broke and sick at the same time is really tough. 

So what's in your mental health wallet?  You can't control the stock market, but you can control what happens between your own ears.  Take a tip from how we use music in care of the seriously ill.  This is a time when the world itself is under serious stress.  As I write this I'm listening to a review copy of Paul Baker's latest CD of Celtic harp music, The Quiet Path.  Paul is one of my favorite harpists.  As I listen to his gentle sounds, I am slowly coming down from a demanding day.  Paul's other CDs (including The Ladder Of The Soul) are among the recommendations at Growth House's Quiet Channel, where you can find suggestions for relaxing and comforting music.

If you're too broke to buy a CD, you can create your own free radio station on Pandora.  Just give it the names of one or two of your favorite songs, and like magic Pandora will play similar music to fit your mood.  You can even share your personal stations with friends, using Pandora's social networking features.  You can tune in to my stations, for example.  Sharing music with others can remind you that you're not entirely alone in this dog-eat-dog world.  Social support is a key factor in mental health.  Music is a powerful tool to move emotions, and sharing those emotions with each other may help us get through tough times.

Conflicts over healthcare costs likely to increase

A new study (June, 2008) by the Commonwealth Fund finds that 25 million Americans are underinsured -- meaning they have health coverage but still have medical expenses they cannot afford. Commonwealth Fund president Karen Davis reviews the findings in her column. When added to the number of people who are uninsured at some point during the year, a staggering 73% of those with incomes below twice the poverty level are either inadequately or unstably insured. The number of underinsured has risen by 60 percent since 2003.

David cites the new study as evidence for her call for universal coverage that provides comprehensive benefits, saying:

"We cannot accept a health care system in which 42 percent of Americans under age 65 are uninsured or underinsured," Davis writes. "We must pursue a workable solution that mixes private and public coverage -- well before the majority of Americans find themselves with no coverage, or with coverage that has been chipped away until it no longer serves its purpose."

Davis and co-authors Cathy Schoen and Sara Collins spell out their own "Building Blocks" framework proposals for healthcare reform.

So which politician will wave the magic wand anf fix this? The Washington Post reports that Medicare and Medicaid are projected to devour half of all federal spending by 2050 ("Big Promises Bump Into Budget Realities" 21 June 2008).  The political unpopularity of cutting back on Medicare benefits was the reason for yesterday's dramatic House vote passing an eleventh-hour Medicare bill stopping proposed cuts to provider payments by a 355-59 vote, with 129 Republicans joining all Democrats who voted to approve the bill.  Stopping the provider reimbursement cuts is getting all of the attention but the House bill also contains a provision scaling back reforms to competitive bidding for durable equipment.  A New York Times piece comments that the rough sledding over competitive bidding is a foretaste of the resistance bigger-ticket reforms will have in the future. (See: "High Medicare Costs, Courtesy of Congress", 25 June 2008)

In California, where budget problems are as abundant as sunshine, a proposal to limit Medi-Cal benefits for some legal residents is getting mixed reviews. And our friendly pharmacists (among others) have filed a lawsuit seeking to stop proposed 10% Medi-Cal provider cuts as July 1 approaches.

As healthcare spending continues to rise, as demographically it must, we can expect conflicts of these sorts to intensify.

Technorati meets Twitter

I must confess that I am charmed by Twitter, the micro-blogging service.  It's a sort of haiku blogging, in which you get 140 characters to tell your story.  Thinking like a headline writer is good discipline!

"Tweets" (as Twitter posts are called) are short attention span soundbites that have low cognitive load, but potentially persuasive impact.  In an earlier era the office water cooler was the place where you could get a quick "heads up" on things, neatly summing up office politics with a wink and a nod prior to the formal memo coming out.  Twitter works in a similar way, like the water cooler for the blogosphere.  Quite a few bloggers use it to rapidly circulate tips on interesting content, hot news, and emerging ideas that may not be ready for prime time.  Some of these offhand tweets later show up as developed blog pieces, but most just pass by in moments as the river of Web 2.0 chatter flows on.

I have found that my Twitter feed is easier to update than my blog, so I now post news items mostly to Twitter.  My Twitter feed appears on the right side of my blog page so these sorts of short news links will show up in the blog location itself.  And today Debbie Ruder, the author of the Goodbyes blog, showed me how to add my Twitter feed to myTechnorati profile.  I didn't know you could do that, but it works. To learn how, check this simple how-to provided by Rita Wilhelm.

Debra Ruder On Goodbyes

I'm pleased to welcome Debra Bradley Ruder as our newest Growth House blogger. Debra is a Boston-based writer and editor with over twenty-five years of journalism experience. For the past ten years she has worked at the Dana-Farber Cancer Institute, writing about health care issues.

Her new blog Goodbyes will focus on conversations at the end of life. The idea grew out of a Harvard Medical School course called "Living with Life-Threatening Illness" in which first-year medical students got to know gravely ill patients. Toward the end of the semester, students were encouraged to say goodbye to their patients and thank them for imparting lessons they could carry into their medical careers.  Debra won the American Medical Writers Association 2007 Eric W. Martin Award for Excellence in Medical Writing for her feature story on that course, "Life Lessons" (Harvard Magazine, Jan.-Feb. 2006 issue).

Since then she has been collecting stories from people who had a chance to say goodbye and others who didn't.  Her pieces on farewells can teach us about what really matters in life.

Dying To Live

Dying To Live is a reality film by Ben Mittleman documenting his open-heart surgery for a leaking mitral valve, a genetic heart condition that had killed his father.  I recommend the film as an honest look at the emotional rollercoaster that serious illness can involve.  Mittleman is still alive and is doing well in Los Angeles.

The film will be released on March 13, 2008 in Los Angeles and will have a theatrical run of two weeks.  Les says check it out.

Most of the film consists of Mittleman's first-person narration, home movies, and conversations with others. There's no analysis of what's going on, and no statistics about prevalence of this or that.  Instead we get an unvarnished slice of life, with the filmmaker turning the camera on himself as he tackles some truly scary medical problems.

The interest of the film lies in Mittleman's range of emotions as he faces his own medical challenges and the illnesses of his loved ones.  Several of his family members die during the course of filming. Seeing so many of MIttleman's relatives cope with illness takes the film out of the purely self-absorbed category that some reality documentaries fall into. His mother was diagnosed with colon cancer, survives for several years, has brain surgery and finally dies. His Aunt Bess settles into an assisted living facility and finally dies. His dear friend Valerie is diagnosed with lung cancer that eventually proves incurable. He and Valerie decide to marry (after dating for 21 years) and Valerie receives hospice care prior to her death.  Valerie's aging houseman Sam has a stroke and throat cancer, progressing from assisted living to nursing home, finally dying under difficult conditions in which his advance directives were not on file with the hospital, resulting in unwanted insertion of a feeding tube.

The film gives us a direct look at the emotions of anxiety, fear, anger, and depression that often come with serious medical problems.  Mittleman's honesty in revealing his feelings is impressive.  You can view this as a rare type of "guy flick." Mittleman had worked as an actor, often cast as a beefy tough guy. We don't often get to see a man that looks like a football player being this exposed. His mood swings from angry rage to pained crying, sometimes within a few moments.  Men in particular will identify with some of the "guy moments." Prior to his diagnosis Mittleman had been very physically fit, so his declining physical capacity is a challenge to his sense of self.

With so much illness and death on the radar, you would expect the film to be a downer, but I did not experience it that way.  Instead, there is a positive, life-affirming tone that consistently keeps its chin up despite the problems.  Family, love, and the courage to keep going are quiet subtexts, without any preachy tone. 

We get enough glimpses of medical procedures to make us share the discomfort, but thankfully the film does not linger on them at excessive length.  The main focus is on what Mittleman is thinking and feeling as he tries to cope with life-threatening unknowns. His illness drives him to re-evaluate his values, his family history, and everything else about his life.  While he does not elaborate on his religious views, he draws strength from his Jewish heritage, which is reflected in family interviews, a conversation with a rabbi, and personal scenes.  He mentions Talmudic scriptures in passing as he reflects on what the experiences mean, but there is no preaching or deep philosophical discussion. 

Surprisingly, there is not a single mention of costs, insurance coverage, or other financial matters.  Many documentaries on serious illness give the impression that wonderful medical care just somehow happens.  Did the operation cost money?  Who paid for it?  Did Mittleman ever worry about the financial impact of his illness, including the loss of ability to work? These omissions aren't a reason not to see the film, but they do reflect the fact that the costs of care are often overlooked in films of this type. It's a good film anyway.  For more on the film visit: http://dyingtolivethemovie.com