Want to Help with Dinner or Come for a Visit?

Here's how: See the Activity Calendar You can sign up for a date to bing a simple dinner for Doug and Betsy or to stop by for a quick chat to catch up. Thanks in advance for your help and your fellowship!

Doug’s Charities

Doug designated a number of charities as beneficiaries, and we encourage those who wish to commemorate Doug’s life to consider following his lead.

  • Rotary International Polio Plus Fund
    Doug joined the Lithia Springs Rotary Club soon after he and Betsy moved to Ashland. Rotary International has since 1985 devoted itself to the cause of eradicating polio worldwide. The project is now 99% successful, and the organization is in the final push to complete the goal. Every little bit of support helps.
  • Ashland Emergency Food Bank
    The Ashland Food Bank is a privately-supported social services organization in Ashland, and a crucial part of the town’s safety net. Doug regularly provided homemade rolls for their “Tasty Tuesday” free meals.
  • Adirondack Mountain Club
    Doug was a life-long outdoorsman, from his childhood  experiences working at a scout camp in Colorado, to he and Betsy’s frequent hikes along the coasts, mountains, and river valleys of Oregon. For over four decades, Doug and Betsy spent their summers in the Adirondacks; the Adirondack Mountain Club has since 1922 been dedicated to preserving the natural resources of the region.
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Douglas W. Gentry, 1951–2013

Doug

Douglas Willard Gentry, of Ashland, Oregon, passed away at home on Saturday, November 9, 2013; he was 62 years old, and was diagnosed with a sarcoma, cancer of the soft tissue, eighteen months prior. Doug was born in Evanston, IL on April 10, 1951 to Willard and Patricia Taylor Gentry, and grew up in Midland, MI. Doug graduated from Stanford University in 1973 with a degree in sociology, but most importantly having met Elizabeth Downey Goddard, whom he married in a garden wedding in the Adirondack mountains on August 24, 1974. The two moved to the University of Michigan where Doug earned a joint master’s in applied economics and public health. From there, they moved back to the San Francisco Bay Area where Doug worked for Kaiser Permanente for seventeen years in a variety of executive roles. After leaving Kaiser, Doug continued to consult privately on health care matters and internet projects, but largely turned to his great love, teaching. He taught primarily at Saint Mary’s College of California, in both traditional undergraduate and adult education programs.

In 1980, his son Philip was born, followed in 1983 by his daughter Katherine. The family moved to Washington, DC for six years in 1981, before returning to Piedmont, California, where their children grew up and where he was heavily involved in community activities ranging from youth soccer refereeing to providing web support for the Piedmont Choirs and other non-profits. In 2004, Doug and Betsy moved to Ashland, Oregon where Doug taught economics at Southern Oregon University, and in his last year served as director of the University Seminar Program.

Doug was an inveterate civic leader with an exceedingly strong moral compass, known for his compassionate, upbeat, and methodical leadership. An Eagle Scout as a child, he mentored countless youth through the Piedmont Boy Scout Council until deciding to resign due to the national organization’s discriminatory policies. In Ashland, he was heavily involved with the Lithia Springs Rotary Club, volunteered with the Oregon Shakespeare Festival, served on the City Budget Committee, and served on the Board of Directors of the Ashland Community Hospital, including a term as Chair that lasted until his final illness. Shortly before passing away, he was named the 2013 Citizen of the Year by the Ashland Chamber of Commerce.

Doug was also a life-long avid outdoorsman, especially in the Adirondack Mountains of upstate New York where he and Betsy vacationed every summer. Perhaps most characteristically, he also loved cooking and especially baking, going so far as to attend a weeklong baking course at King Arthur Flour in Vermont. Family, friends, students, and attendees of the Peace House free Tuesday meals will dearly miss his regular supply of fresh-baked treats.

In addition to his wife Betsy, his two children and their spouses, Mary Peacock and Craig Hutchings, Doug is survived by his father, Willard Gentry, sister Katherine Duso and her husband Paul, brother Stuart Gentry and his wife Abbie, and sister Mary Gentry, as well as his new grandson, Wilfred Peacock-Gentry, aged five months. His blog of the cancer experience can be found at: http://www.plain-sense.com/

A community potluck to remember Doug will be held at the Ashland Community Center on Friday, November 15, from 3–6:00 pm. In lieu of flowers, the family invites contributions to the Rotary International Polio Plus Fund, the Ashland Emergency Food Bank, or the Adirondack Mountain Club.

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Goodbyes and Gratitude

Hi everyone, This is actually Phil writing, Doug’s son. We have sad news to report: my father passed away last night. I am going to include below my mother’s message below, but I want echo the gratitude she expresses. My father was a remarkable man, and as she says, we are still making plans for how best to honor his life, but the the love and support we’ve all felt is already an amazing tribute to him. Phil

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Doug died peacefully in his sleep last night (about 12:30 pm).  A wonderful caregiver from Hospice was with me and the hospice nurse came right away.   The kids are flying in tomorrow, and Casey, Gus and I are doing OK here. We’ll get more details to you as we work things out, but most all, thank you everyone for the grace and love we have felt from all over during the past months. Betsy

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Travelogue

Never fear – I”ll keep it short.  So, our flight to Oregon was a private charter. We learned that a dog was on the previous day’s flight, too – a bouncy boxer, whose owner is Stockard Channing. Ms. Channing being on the flight the previous day was worth a social media note from our daughter Katy.

You can drive up to your chartered plane and they stocked it with our luggage, the rest of us, and me. Stocking it with me is not a bad phrase. I remain very limited in mobility – side to side and front to back. These muscles are competing with the cancer cells for protein and they, little by little, lose the battle or don’t improve. I can progress with the walker, once in an upright position, but getting there is a combination of musculo-strategies.

So it was something of a circus pushing and pulling and jamming me up the small stairs, through the cabin, to my seat. But once enthroned I was comfortable and set. Nice cabin, but no James Bond set – still a short flying tube with not quite enough head room. Snacks and water provided, no attendant, but also a very professional, soliticious crew who checked on us, came back and gave us updates, and the like.

Skip 6 hours of flying at 43,000 (!!) feet. It was cloudy the whole way and that was so high that the mountains faded into mist. Smooth ride almost all the way there.

The process in Medford was just the same, only in reverse. Our friends and neighbors Holly and Larry were there to meet us. Casey in particular is a fan of theirs since he stays at their house when needed and Holly spoils him. Great surprise for him to see her on the tarmac. We arrived to a clean house, courtesy of the house sitter, a pot roast in the oven courtesy of  Holly, a set dining room table, and good vibes of home.

We’re also climbing out the the fog of the trip and the change in venue but that’s a happy chore.

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Bawling

I’m not sure where or whether to post this, but now starting the process here are my apologies, Craig, for a slight breach of confidentiality.

We have a wonderful son-in-law, Craig  - now married to our daughter for just over a year. He’s up to his bushy eye brows in musical theater – working box office and marketing for a theater during the day and acting, singing, and directing as much as possible during the evening. So, between our musical daughter and her husband there is the starving artists shadow lurking and they both love it.

Friday night I had to say good-bye to Craig. Chances are slim that he will be able to come west as I start to die. My “switching to memories” mantra is harder to apply here since we have fewer of them built-up.

Craig Hutchings

Craig Hutchings

Katy and Craig came over for a quick visit on Friday and I pulled Craig aside. What to say to that earnest young man who will partner my daughter, help raise her children, console her when auditions are flat, anger her when he makes a typical dumb-husband move, and celebrate triumphs big and small?

I bawled.  We walked to a back room and I’m joking not to worry about what I was going to say, etc…and I let flow.

I told him I was so happy that Katy had him to be that life partner – one more thing to be relieved about  in this next chapter. I also allowed as how that I didn’t have any insightful words of wisdom – just love. And then we hugged and I cried some more.

That’s how I said, “good-bye,” to my son-in-law.

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Excited and a little scared

We fly back to Oregon tomorrow – Monday, October 28. As I’ve noted earlier the decision to return home was at once easy – it is home after all – and difficult. It’s time for Mary and Philip to have their complete, fulfilling lives – without the extra leavening we might provide.

The accountrement (can’t use that word very often) of the trip could hardly be better. Jet travel, upgraded aircraft, close in car access, and Katy will be joining us for the trip and a few days after.

Still, I’m a bit scared about the trip. I’m a good flyer – no problem there – never really feared flying. It is the unknown of how my body will react to travel. Best guess is that the trip itself will be uneventful but then it will be a long recovery. We’ll just have to see, and certainly I’m in no mood to delay or cancel. Let’s get there and find out.

Just a quick note on your many offers of support in Ashland. I’ll send out some more information soon that should help match your offers with our requests. We’re all set for the arrival – transportation, groceries, first dinner and the like.  And then the real treat will be connecting with as many of you as we can in the days and weeks to come. We’ll have to meter those visits – I’m a huge fan of naps – but they will be nice reunions. Doubly nice.

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More about Hospice

I’ve mentioned hospice in several earlier posts and promised at one point to return and provide more information.  Here goes….

First – a big disclaimer: I am writing this as a patient, with access to information materials and an appreciation for how the other part of healthcare works. But I may make mistakes in my description. I might mis-represent the hospice polices or their specific benefit suite. So I will rely on the reader to take this as a beginning but not a definitive source, and if anyone spots an error they will let me know directly or through the comments.

I’ve extolled the “soft stuff” about hospice quite a bit already. Hospice is ideally suited to help patients glide comfortably towards death, while skipping the almost combat-like atmosphere of trying to heal or cure the remaining illness with technology and intervention. Hospice care helps the patient rather than treats the condition. Along the way the assembled team of staff are compassionate, gentle, and understanding. They are, as I mentioned sometime earlier, angels.

Outside the angel-side what is hospice?  On one important dimension it is a set of pre-defined insurance benefits. Medicare and other insurance plans recognize that hospice care saves money. Enrolling a terminally-ill patient into a hospice program has the potential to reduce expenses for those dramatic, end-of-life treatment regimes and improve the quality of life for those patients.

The insurance industry, as it often does, takes its cue from Medicare, since so many terminally ill patients are in Medicare, and no commercial company wants to be out of step with Medicare or the others. Based on the cost saving/quality of life premise, Medicare will pay for treatment, related only to the terminal illness, that helps the patient feel better. The hospice benefit does not cover treatment of another illness the patient might have, but Medicare will still reimburse, on a regular basis, to treat that illness outside of the hospice program.

Once we are in the insurance/benefit world folks think about eligibility. Here’s the key eligibility phrase used by the National Hospice and Palliative Care Organization, “be determined to have a terminal illness which is defined as having a prognosis of 6 months or less if the disease or illness runs its normal course.” It’s possible for hospice patients to continue on the program for longer than 6 months if the disease remains terminal. The eligibility wording here gets murky, so patients and families have to look more carefully as the 6 month milestone approaches.

The other dimension of hospice is that the program is a provider. Hospice uses a team approach. I’m working with my second hospice organization now in Philadelphia and though the sizes of the two groups are different the basic set of support services are the same.

  • Coordinating nurse (RN) – they are our main, most consistent contact. We see this nurse twice a week. She comes to our house, checks to see how things are doing (”what’s your level of pain?” “How are you sleeping?” “Do you have enough medications?”) checks the usual vital signs, and related. It is a casual, comfortable visit, and armed with a laptop, notebook, and smart phone she checks orders, makes new ones, takes notes, and all the rest.
  • Social Worker – they help most often with the business, non-medical side of the arrangement, but their interests are typically broad. They, too, ask how things are going and work to fill any gaps. They offer a counseling role – to supplement any offered by the chaplaincy/spiritual support person. They help with funeral and cremation arrangements. In the Adirondacks they lined up a on-call volunteer who could come over to help with firewood or driving. They come every other week or so – to our place.
  • Spiritual Adviser/Chaplain – just like it sounds. No religious obligation – just another person with whom the patient, the care giver, or the family can talk to. They come very other week or so – to our place. She spends as much or more time with Betsy than with me.
  • Back Office – there is a team supporting those working in the field. Both of our hospice organizations have after-hours support. There are people who make arrangements for durable medical equipment like oxygen and commodes, smooth the paperwork for recertification, and then contracts with pharmaceutical suppliers and/or local pharmacies.
  • Local Physician – We have seen two, slightly different variations for this. In the Adirondacks we had a relationship (somewhat new and tenuous) with a local family practitioner. Given that, our hospice nurse coordinator frequently exchanged text messages with that doctor and the doctor gave the orders for medications and equipment. Here in Philadelphia we arrived without any established relationship. So our nurse uses one of a team of in-house physicians – usually the program’s medical director, since he is available by phone more frequently. When we return to Ashland I have an existing primary care physician there. I’m guessing he will be part of the process but we’ll see how it works.  Here’s an important note: The local physician is not the oncologist, or a surgeon, or another specialist that connotes ‘healing,’ ‘fixing, or ‘ curative.’ That’s an interesting mind-set to walk away from. My two oncologists (one each in Oregon and New York) were hugely important to me in the first part of my treatment. But with hospice we turn aside and look to another kind of practitioner.

There’s at least one more chapter to relate, but we have yet to experience it – the “co-terminal” stage let’s call it, when I’m pretty much infirm. Of course, that may be hard to report on, but we’ll see.

Dark Side ~

Is there a dark side to hospice?  To be fair, we should list some concerns.

  • Certainly there are people who leave the program because they do not feel comfortable with the protocol.
  • The hospice philosophy does not support physician assisted suicide. This is an important issue for families who are confronting death, and who might see suicide as a kind of safety valve for the suffering of their loved one. The hospice response will be that they are not doing their job if the patient is in pain or otherwise uncomfortable and thus contemplating suicide.
  • The data on healthcare cost savings are, oddly enough, mixed. Much of this may be due to the availability of good data, but I’m curious to learn more.
  • In any case where the Federal government reimburses a special program there is an opportunity for profit-taking among for-profit providers. This happens already in cancer treatment (see all those Cancer Center of America advertisements.) Clever managers can find ways to extract profits from “programs.” There are pretty good odds that this could occur with hospice.

Enough of that. The program has been great for me, and we’ve heard, far too often, people say they wish that their family member had started the program earlier.

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Coming Home

We’ve decided to get back to Ashland.

We have the opportunity to fly directly into Medford from NE Philly and my health condition seems stable enough to tackle the strains of travel. This will happen this coming week – before Halloween, though the actual date isn’t confirmed yet.

Gus

Gus

It has been an easy decision in some ways and hard in others. “Going home” gives me a psychic anchor – something to know and rely on, one part of the plans that is fixed. As I started thinking about this more thoroughly I got a warm feeling about connecting the health challenges with the reservoir of “home” emotions. Very comforting. And mechanically the Ashland home will handle me well. Just about everything I need is on our main floor and there is a way to get there with my walker, through the side/garden gate that avoids the front stairs. It looks like Katy will be able to join us for the trip and stay an extra several days to help us settle back in.

And yet this means leaving family (including that favorite/perfect grandson) at a much greater distance. As you have all heard, our support circle has been and is still wonderful. We’re still enjoying visits from out-of-town folk. Philip and Mary offer this nice pied-à-terre within their new home  - not to mention the changes to their schedules, life styles, etc.   I’ll stop here – I’m sure you can all imagine how great and complicated and loving this support has been.

Frankly, when we arrived in Philly I didn’t expect I had too much more time to live. I mentioned “weeks instead of months’ for life expectancy, and it seemed even shorter than that. But in the last week or so I feel more stable. I’m getting more gaunt, and my meds are increased when necessary (not necessary in the last 10 days or so.) Now it is easier to imagine rattling around the home approaching the holidays, and that’s when the home emotions strengthen.

Tons of logistics, but typically for us, lists are starting to build.  We’ll firm up schedules, and as we get a better feel for life-back-in-Ashland we’ll send that along, too.

Mary (my sister) came through town this past weekend, taking a detour from a conference travel trip. As always – a very welcome and accommodating guest. She profiled me a bit for members of my family and I’ll share that here – for an outside view.

[H]e has not gotten any worse in the four weeks since moving to Philadelphia.  Actually he is doing better now than he was doing in his last week in the Adirondacks.   He is sleeping better so needs fewer naps and goes to bed later.  Basically he only needs a nap early afternoon.  Physically he still uses a walker to help get his balance when he first stands up, but then carries the walker when he heads to another room.  He’s not strong enough to handle the stairs – so is confined to the second floor of the three story row house.  He’s also cognitively better – staying with conversations and finding the words to participate.  The cognitive improvement also means he can better participate in phone calls and responding to emails.  My assumption is all this is mostly due to his body getting used to the morphine.

Goodness – another part of the journey – each one more interesting than the last.

Love to you all…Doug

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Who Should Choose – Digital Scope Creep

In the consulting world and other venues there is a phenomenon called scope creep. This refers to a project getting bigger and broader as the client and consultant dig into the project and find more issues and assign more tasks, etc. The result is, inevitably, higher billing fees and extended deadlines.

A more public, but less costly, example of this is watching a photographer with a digital camera and an automatic shutter. With old-fashioned film in a camera a photographer would make their composition and take the shot. Then they would adjust focus and other settings and go again. With fancy digital cameras the artist rips off 3-5-10 exposures right away, with perhaps minor adjustments along the way. The marginal cost of the old-fashioned approach was significant – it at least increased the number of images on the contact sheet and thus the size and number of those sheets. The marginal cost of one more digital image is darn near zero.

Healthcare.  My last round of scans and digital images started out with a thoraic CT scan – pretty much the same as the ones preceding it. There were specified scans to the chest. Pretty straightforward. This time the oncologist added orders for a bone scan. I don’t know enough about bone scans to be able to describe them well, and to what extent those orders are carefully targeted to an area of the body or more open-ended. In my case the doctor was checking to see if the sarcoma was spreading to my spine or other bones. (Probably some small growths on either side of my knees – in the bone. There are variations of sarcoma that are bone-related, but we’re not going to worry about them at this stage.)

[The question about CT vs bone scans, which use different technologies, is another side question about aggressive vs. conservative diagnostic decisions - but I don't know enough about these specifics to weigh in right now.]

So, CT scan finished I’m now strapped on a platform in the bone scan room. “Strapped” is too pejorative – I was comfortable enough –  padded platform, pillows, gentle restraints to help with wayward arms and legs, etc. I just lay on the platform and the scanner moved along my long axis. It did this several times – with particular attention to my pelvis and targeted areas of the spine. Then there was a long pause (10 minutes or more) and then back to some more scanning. It turns out – after I asked – that the radiologist had gotten a preliminary look at first scans (pretty magic – sitting in her office next door or across town – reading these images and making new orders, etc.) and wanted to explore one area more specifically.  Here’s an example of digital creep. It’s a more thoughtful, considered alternative to the photographer firing off multiple, nearly identical images, but in this case there are marginal costs. The physician needs to read those images (time), and with some probability those readings will lead to further treatment, chances for false positives, good or bad outcomes, etc.

And then the same thing happened in X-Ray. X-Rays were not originally ordered but I believe the same radiologist decided that they wanted to see things from that perspective or spectrum. So, off I went in my skimpy gown down to x-ray. And there the automatic shutter analogy was pretty close. The x-ray techs still had to position each shot, step out of the exposure area, and rinse and repeat, but still it was pretty fast. And another pause for diagnosis, I imagine, followed by more exposures. Same deal with marginal costs, positive or negative outcomes.

So here I am not part of the decision making – clearly out of it. I’m not drugged but I don’t jump into a discussion. My oncologist is another step removed from the decision. Whatever the skills and experience of the radiologist we delegated treatment and further diagnostic decisions to her. This does not feel like a good set up.

And a little sidebar… I spent quite a bit of time in the bone scan room – probably 90 minutes or more. It was comfortable enough – enough so that I could doze if I wanted. And apparently I became just part of the furniture. Scanning techs came and went. Some supervisor worried they were out of some kind of supply and was contacting the sales rep for replacements. A party was being planned for later in the week. I just wasn’t there. There’s some meaning there somewhere.

Moral to this story – if I haven’t beaten this horse too much…the digital capabilities in healthcare enable increased use of services and increased costs. Those capabilities might help with outcomes, or not. It’s had to believe this pattern saves system-wide costs.

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Who Should Choose – 2

This is another side discussion focused on the decisions we make as patients, families, providers, and care givers – as we continue on long healthcare journeys. I used the first “chapter” of “Who Should Choose” to illustrate the challenges that come up right away. While the story is appropriate I’m not sure I’ve used it in the right way.   So let’s backtrack just a bit and think about what makes a successful decision – the “right” decision.  I’m guessing that ultimately we’ll end up with two or more dimensions. (That will make this economist happy – he’ll be able to draw a graph or at least put spots on a two dimensional surface.)

So, that takes us into the realm of preferences – what I want maybe the same as what you want – or not. I’m going to use my own preferences to think this through so they may not work with others.

So – some possible criteria that would define success might be:

  • Quality of daily life. This includes moving comfortably, reasonably free from pain, and having as much independence as possible.
  • Life expectancy – pretty straightforward, though there is a hitch. Life expectancy is colored how that time is spent. There’s good time and not so good time. It gets wrapped around the quality of life criterion. That’s what we may need a two dimensional graph.

So far I’ve used these two criteria as we wrestled with my cancer. They helped drive the decision to stop at the basic treatment protocol. I bet there are more considerations lurking around. I’ll add those back here if/when they occur. And I should think how to incorporate them in the stories from chapter 1 and those that follow.

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