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Monday, October 26, 2015

When I Grow Up I Want to Be an Old Woman -- revisited

© Imelda Maurer, cdp February 19, 2009

I’m sitting here this evening in front of the TV answering some e-mail. I just saw the Kaiser Permanente Health Management ad – once again.  It's a delightful one-minute commercial.  Click on the link above to see this now before you even think about reading the rest of this post.

The words are sung: “When I grow up I want to be an old woman , an old, old woman.” I like that image in itself. I mean, after all, when do we ever hear anyone saying or even intimating that they want to ‘be an old woman.”

The accompanying visuals show old women – heavier than they were thirty years earlier -- but vital, happy, purposeful – looking in the mirror, keeping time to some music, laughing with friends, playing tennis, enjoying life –

It’s such a refreshing image. “I want to be an old woman.” The alternative is an early death. How often I think of my sister, three years my elder, who died at age 49, that she did not get to grow old along with me so that we could each grow, together, to be “an old woman, an old, old woman”

Kaiser has another ad in which the audio is short and simple: Kaiser: Thrive!

“Thrive” is a medical, nursing term. An inexplicable nursing condition is “failure to thrive” which can lead to death. But we all know that term, thrive, as holding so much more. What images does it bring to your mind’s eye? One thrives in a nurturing environment, in an environment which honors our uniqueness, our abilities, our life story. Above all, one thrives in the circle of loving relationships.

Kaiser has done a great favor in showing these ads because they shed a little light on the adventure and the sacredness of the latter years of one’s life.

Wednesday, October 14, 2015

A Lovely Piece of Mail!

© Imelda Maurer, cdp October 14, 2015

Yesterday’s mail included a card from Sister Antona, a Sister I know whose Congregational mother house and administrative offices are here in the St. Louis area. Its message was “Come visit me at my new home!"  This elder Sister, whom I have visited before when she was living in an apartment complex, has now moved to a retirement center where she is receiving the supportive services she needs.

I love that this Congregation has shared this “new address” information with Sister Antona’s friends. That action reflects the recognition of the primacy of relationships at every stage of life.  It says in its own way, ‘hey, I’ve moved.  I have a new address.  But what was important to me in the past –keeping in touch with friends, maintaining relationships – is still important, so I want to continue to stay in touch!’

The letter also indirectly says that life is more than ‘good care.’  That phrase is often the stock response of a person evaluating a nursing home where a friend or family member lives:  “They get good care there.”  I wrote about that in an earlier post on this blog.

The card also reminded me of the goal of true, transformational culture change in communities that provide aging services:  We want the biggest change that an elder experiences when s/he moves to an aging services community to be just that:  a change of address. We want to still be at home ---- home which is a place where privacy, respect, security, choice, continuing one’s chosen daily routines, autonomy spontaneity and grace are part of every day. I hope that’s true for you, Sister Antona!  I’ll be over to visit very soon!

Thursday, September 24, 2015

Falls among Older Adults

When an older adult (65 years and better) falls, it can be a major and traumatic health event, often leading to death within a year.  There are many Fall Prevention Programs for older adults living in the community (as opposed to an assisted living or nursing home setting).

The National Council on Aging offers information about various programs as well as handouts, videos and tips about fall prevention at their website
Senior Centers often offer such courses at a minimal fee. I found a “Matter of Balance” program (8 classes) in St. Louis for only $3.25 for the entire program.

Interestingly, a major risk for falling among older adults is the very fear of falling. This fear translates into physical changes in one’s patterns of moving about.  Classes that enhance balance, strength and more physical exercise provide a physical and psychological base confidence, reducing fear of falling.

Michele Obama has popularized the phrase “Let’s keep moving”.  It’s good advice throughout the entire lifespan!

Tuesday, September 22, 2015

A Revolution of Mercy

© Imelda Maurer, cdp September 22, 2015

The following are words of Pope Francis to the people of Cuba, calling them (and all of us) to a revolution of mercy!

"Our revolution comes about through tenderness, through the joy which always becomes closeness and compassion, and leads us to get involved in and to serve the life of others."

If this culture of Mercy became the dominant culture in nursing homes and any other community, licensed or not, where supportive services are offered to older adults, what a revolution we would see!
Imagine –if mercy, tenderness and compassion carried the day –
What care planning meetings would look like!
What dining services would become!
What the daily ‘schedule’ would become! 
What the morale of staff would be!
What leadership, growth and development would burst forth among the staff!
What positive outcomes residents would experience physically, emotionally and psychosocially.

Hmmm---  That last phrase, for those readers who work in licensed homes, will be recognized as coming directly from Federal regulations: 

Sec. 483.25          Quality of care.
“Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being”

That same mandate is noted four more times under the responsibilities of these disciplinary areas/departments:
                Medically-related Social Services
                Resident Assessment
                Nursing Services

The terms ‘accommodate’ and ‘accommodation’ are also used about five times in the federal regulations, always in the context of resident needs, preferences and choice.

I continue to find it awesome and profoundly true, that there is a close parallel between Faith values (and Sisters’ Congregational documents, mission and values) and the spirit and letter of the “Minimum Standards of Care”, the Federal Regulations. If any reader can cite an example of when the regulations do not allow mercy, tenderness or compassion, please share that information .

Imagine if we had a Revolution of Mercy in nursing homes across our country!

Tuesday, September 8, 2015

Some Smart Persons Who Agree with Me!

© Imelda Maurer, cdp September 8, 2015

There has been much written over the last several years about the promising role of technology in improving the quality of life in our later years.

The mad dash began some ten years ago or less with software companies touting brain health and brain fitness for elders through the use of their computer games.  I never really believed in the effectiveness of this approach, though I did observe elders in a retirement center some years back eagerly going through the progression of computer-based exercises and clearly feeling a sense of accomplishment.

Now we know the following:  A Special Health Report from Harvard Medical School Special Report concludes that “people who play these games might get better at the tasks they practice while playing, but the games don’t seem to improve users’ overall brain skills, such as attention, memory, use of language, and ability to navigate.

What is a more effective way to maintain brain fitness? Gene Cohen in his book “The Mature Mind” points to research from the National Institute on Aging showing that the following are the most successful ways to maintain normal memory and overall brain fitness:  engaging in new activities and hobbies, reading, maintaining social relationships, and engaging in healthy physical exercise – that 30-minute walk several times a week.

A second way in which technology is presented is in the context of improving care for older adults.  There are so many types of monitors on the market, for example, that promise this ‘better life.’ After critiquing a few popular high-tech approaches to elder health care, Dr. Ken Covinsky, UCSF School of Medicine says this in today’s post at “My advice to entrepreneurs and venture capitalists:  Think high touch before high tech.  What kinds of innovations will actually improve the quality of life of older people and make them feel better and promote social engagement?  Think about this question before even thinking about technology.  Then and only then, think about how your technology can promote high touch.  Technology that promotes high touch is where the real innovation may lie-and your chance to prove us skeptics wrong."

High touch over high tech any day!

Wednesday, August 19, 2015

Singing the music that is in the Heart of God

© Imelda Maurer, cdp August 19, 2015

The Pioneer Network, on its Facebook Page, posted an article this morning from McKnight’s online publication. The article is entitled “Spirituality in long-term care” by Eleanor Feldman Barbera, Ph.D. Pioneer Network asked if there were any comments. Oh, yes, I have a comment!

Dr. El, as this PhD. psychologist refers to herself, gleaned from Kushner’s book, “When Bad Things Happen to Good People” the message that the question of the negative events of our life should be not “Why me?” but “Why not me?”  Dr. El uses this insight to “help people come to terms with their experiences.” “Come to terms”----hmmm --- Does that mean I should accept my situation without any positive expectations? I’ve seen this attitude of ‘coming to terms’ addressed by priests and other ministers who advise elders in nursing homes to practice patience when they have to wait endlessly for their call bell to be answered.  I wonder if that minister, before s/he leaves the building, addresses the issue of call bells not being answered promptly. Or is the message that is implicitly implied, as those of us in the Catholic tradition used to hear so often years ago:  Just “offer it up.”

Another “spiritual aspect of long-term care” according to Dr. El is “the need to cope with the rules and regulations of an institutional environment.” The task, she says, is to “stay serene in the face of these challenges.”  Another example of ‘just offer it up.’  The prior question, however, must be asked: WHY are elders forced to live in an institutional environment? 

Many years ago I gained an insight about this “offer it up” message. I heard a zealous Jesuit priest in New Orleans say that as religious with a vow of Poverty, we should live like poor people.  That included, he said, using the services of Charity Hospital when medical services are required, just like poor people are forced to do by necessity. I took the words seriously and when a minor incident prompted my need for emergency care not long thereafter I went to Charity Hospital Emergency Room in Lafayette. It was late afternoon on a Saturday. The only details I remember are seeing the large number of people coming in with all sorts of emergencies. I remember waiting for hours in the large waiting room with so many obviously poor and overwrought families. I left Charity Hospital with a new insight:  my role is not to endure Charity Hospital services, but to work to change the system so that no one has to endure those conditions. I must work for the presence of conditions that honor my and every other person’s dignity and rights. After all, this is what God wants for each of us.  Such scenarios reflect the Kingdom of God among us.  This is what we work for, the presence and lived experience of all that God wants for each of us.

Sister Carol Zinn, in her Presidential Address to the Leadership Conference of Women Religious in 2014 spoke of precisely these kinds of issues and conditions using a stirring metaphor: God's wish for all that is good for us as the music that is in God’s Heart. Carol noted many ‘lamentations’ in today’s world: war, poverty, hunger, persecution. And she repeatedly asked:  “Are we standing in the lamentations singing the music that is in the Heart of God?”

The lamentations of our elders who live in institutions are so obvious:  task and schedule taking priority over person-centered living; resultant boredom, depression, withdrawal, loss of self. Many of these losses are due to the effects of ageism throughout our society. Ageism which is so deep and so pervasive that we – even many of us dedicated to aging services – succumb to its lethal consequences to our elders and our staff.  We wear blinders so close to our eyes that we fail to imagine there may be another way to serve our elders. 

Our task is not to tell our staff and elders, in effect, “offer it up.”  We are impelled to change the system, to bring forth the Kingdom of God among us.  More beautifully stated by Sister Carol Zinn, we are called to stand in these lamentations and sing the music that is in God’s Heart.

Let us sing! With loud, determined and persistent voice, with courageous and compassionate hearts!

Thursday, August 6, 2015

"Oh no, it's going to happen again."

© Imelda Maurer, cdp August 5, 2015

Every June all the Sisters in my congregation “come home” to our motherhouse in San Antonio. This has been our tradition since our first Sisters came to Texas from France in 1866.  In the past those summers at home consisted of seven weeks that were taken up with a week of retreat and six weeks of college classes. We were always working for that next degree that would add to our competency as teachers, or for courses that would update our professional knowledge.  Now our summers together have shrunk to about a week’s time plus a week of retreat.  We come home to celebrate Jubilees, to meet in one large circle for our annual Assembly, to remember in touching ritual those who have been called from the circle to the fullness of life over the preceding year, to spend leisure time at the table in easy conversation, to enjoy special moments rekindling and deepening long-time friendships. On the final day of our time together, I always experience an eagerness to “get back home”.  (Yes, I suppose I have two homes!)  Mixed with that eagerness is a real sadness and nostalgia. I have loved the circles I have been a part of. I will miss seeing my Sisters that I have spent intensive time with over the preceding several days. This sadness and nostalgia only exists because we are a community. We have all experienced and deepened the bonds of community in our short time together.

There is one other place and time when this same sadness and nostalgia come over me: at the end of the Pioneer Network Conference. This emotional response was not in my consciousness ever during the conference. However, Tuesday evening I went down to the lobby to get my boarding pass at the public kiosk and the relative emptiness and inactivity in the lobby spoke to me. Tomorrow everyone would be heading home. I heard myself thinking, “Oh no, it’s going to happen again.”  That sadness and nostalgia began to bubble up.

It’s not a bad thing, this sadness and nostalgia. It is at the same time a source of positive emotion because it witnesses the presence of community. That’s a pretty amazing thing – going to a national conference and experiencing community.

I leave you with just two thoughts: I believe that the sense of community that exists, certainly in multiple and intersecting circles of participants within the Pioneer Network, is due in large part to a common shared commitment to the noble, challenging and exciting work of transforming the culture of aging and aging services. It is also due to a conscious effort within the organization to encourage networking and meeting new people at the conference. I have never been to a conference where strangers get on the elevator and engage one another!

And secondly, if you are engaged in aging services, or if you are responsible in any way for those who are engaged in aging services, you really should connect with the Pioneer Network.  They have a great website with lots of information and free resources.  Their annual conference is always very stimulating and challenging.  Next year the conference is in New Orleans.  Plan to be there!  You will see so many things with new eyes!

Monday, August 3, 2015

Monday morning report

© Imelda Maurer, cdp August 3,2015

It’s like homecoming week here at the Pioneer Network Conference.  You know the experience of seeing old friends once again.  And the friends I connect with here at this conference are a source of a special delight because they all have in common their efforts in and their commitment to the journey to Culture Change.

Last evening I had a long visit with Karen Schoenemann.  Karen retired recently from the Center for Medicaid and Medicare Services where she directed that part of the agency that wrote nursing home regulations. Karen is also a founder of The Pioneer Network. She tells the story of that meeting, summarizing it by saying that when she joined this circle of Pioneers (truly pioneers for life-giving change for our elders) she was so delighted and uplifted: “I finally found my tribe!” I identify with that too each year as the changing-yet-stable group gathers once again in pursuit of such noble goals.

 Yesterday’s workshop with LaVrene Norton and Megan Hannan was very rich.  Just one thought this morning.  It comes from the book, “Breakpoint and Beyond: Mastering the Future Today by George Land and Beth Jarman which LaVrene pointed to several times.  “The springs don’t push the river. Gravity pulls the river to its future.”

The implication of this the authors tell us is that “when enough people in an organization are prompted by a powerful purpose to commit to a shared vision, they are drawn to it like water to gravity.”

Saturday, August 1, 2015

Busy Doing Nothing?

© Imelda Maurer, cdp  August 1, 2015

"Are your residents busy doing nothing? Are they actively engaged? Evidence shows elders prefer continued engagement in meaningful and purposeful activities/occupations. Those who are occupationally active show positive therapeutic benefits; need less help with self-care; report positive mood; and describe greater quality of life.

“Despite positive outcomes of meaningful engagement, studies suggest elder residents are inactive most of the time, are engaged in passive activities, and do not experience significant verbal interaction with caregivers. This session offers real-time strategies to increase engagement for residents living in post-acute settings, and to focus on continued quality improvement plans.”

The above is a description of one of the sessions at the current Pioneer Network Conference. The title is an apt description of how too many elders spend their days in “Activities.” As Carter Williams, renowned geriatric social worker has told us, “Life is not ‘activities’. Life is about engagement.  And it is about relationships  These are the standards against which to measure what’s going on in terms of  how our elders spend their days. Applying these standards calls for us to really know each person we serve. To really know his/her interests, life-long habits and preferences, the passions throughout his/her life history, about the presence of significant relationships that make life richer -----.  Those suggestions are just for starters.  Applying them, I believe, would mean we would see fewer groups engaged in passive events or in ‘activities’ that hold no meaning or purpose for the individual.  It is a challenge!  It’s a worthy challenge!


Friday, July 31, 2015

Remember the Sears Christmas Catalog?

© Imelda Maurer, cdp  July 31, 2015

One of the anticipated excitements of my early childhood was the Sears Christmas Catalog that the mail carrier delivered faithfully.  Oh, the excitement of looking through all the pages of toys -- again and again!  Years later when I rediscovered the joys of gardening, I had that same experience when the Burpee Catalog arrived, as it always did, in the dead of winter. Oh, the snow peas! The summer squash! The broccoli for the fall garden!  Now, in my very mature years, that same sense of excitement is anticipated and experienced when the educational sessions of the Pioneer Network Conference are posted on their website!  Oh, the agony of having to select one over the other at times!

For several years I have actively encouraged participation in the annual conference of the Pioneer Network.  I do so because for anyone engaged in any way in the noble work of serving others through aging services, this conference is just absolutely the best!  It is the only national conference that focuses entirely on changing the culture of aging and aging services.  Think about that mission for a minute!

I’m leaving on Saturday, August 1st for this year’s conference in Chicago which opens with a marvelous full-day pre-conference workshop led by staff of Action Pact. LaVrene Norton and Megan Hannan are the guides.  As is standard within the Action Pact team, these presenters are superb in understanding how adults learn and in their utilizing the most effective techniques. The results include not only new knowledge, but experiences that deepen and extend the cognitive issues presented. There is always a sense of community that arises from their work.  Sunday will be a wonderful day!

For those of you who cannot be there in person, the Pioneer Network is offering some of their wonderful conference sessions free to the public via live streaming.  You can go to this website to see the specific sessions that will be streamed. There is also a brief description there of each streamed website and the names of the presenters.

If you are working in an aging services organization, take advantage of this opportunity; plan to have a live, streamed in-service with your team members. Invite Board Members to view a selected session to advance their own understanding of and commitment to transformative culture change for the elders in your organization.

I hope to have a few minutes to share more of the experiences of this conference as the days go on.

Tuesday, July 28, 2015

Changes are Afoot!

© Imelda Maurer, cdp  July 28, 2015

Years ago in undergraduate philosophy courses, at least as I remember, we studied how classical thinkers envisioned change.  Heraclitus taught that things are constantly changing. “All matter is in flux.”  This ongoing change takes place while the underlying essence is maintained. Heraclitus taught, in fact, that change was necessary for an object in order for that object to maintain its essence.  An example:  I am the same person – in essence – throughout life.  But where is my five-year-old body?

We expect change.  As knowledge, awarenesses and technology expand, related, logical changes show themselves outwardly.  Let’s look at the hotel/motel industry for example. Basically the mission of this industry has always been to provide respite and comfort for the traveler, the person away from home.  Let’s quickly surf the changes over the past 60 years.  For those of you who can remember back that far, do you remember signs outside public buildings, motels included, that exclaimed “Air Conditioning!”  Later motel marquees began to note “HBO” followed by other up and coming amenities:  free Wi-Fi, a smoke-free environment, free breakfast. Can you imagine anyone even entertaining the thought of a night in a hotel or motel without most of these amenities being taken for granted? This hospitality industry has changed greatly, and yet has remained the same because its mission is basically the same:  respite and comfort for the person who is away from home.

What about institutions that serve our elders today?  Yes, that dreaded term, nursing homes.  Is the nursing home you visit, that you have a friend or relative in, the nursing home that perhaps you know you will one day be living in --  has that nursing home pretty much remained essentially the same over the past 50 – 60 years as evidenced by scheduled meal time, enforced rising and retiring times,  baths/showers scheduled by the sole decision of the staff,  an exponential diminishment in the ability to make choices about daily life, the ever-present groups of elders sitting purposelessly and  with a aura of isolation waiting for the next meal, the next whatever.

“They get really good care there” doesn’t cut it as the final standard of validation for any elder’s life if each day is lived within the above environment. Life is more than care!  While the mission of nursing homes has not changed, our deeper and broader knowledge of aging, of geriatric medicine and of psychology call for immediate, humane changes to the present institutionalized life too many elders live in nursing homes.

The Center for Medicare and Medicaid Services (CMS) has proposed some revisions and additions to its regulatory standards for nursing homes, introduced because of these very factors.  In the introduction to the suggested changes, open for comment until September 14th, CMS states why these changes are being suggested.  They include significant innovations in resident care, the presence of quality assessment practices that have emerged and the growing knowledge base of evidence-based clinical services.

More on some of these suggested changes will follow on this blog.  If you or those you love are living in a retirement center that is not licensed, the information is still quite applicable for two reasons.  1) These regulations are referred to as minimum standards of care.  We all certainly want to provide more than the minimum  2) A close examination of Religious Congregations’ principal documents reveal an amazing basis for implementing all of the CMS regulations in the very spirit in which they were written – to enhance the quality of life and the quality of services provided for our elders.

Monday, June 29, 2015

Traveling to Omaha Tuesday morning

© Imelda Maurer, cdp   June 29, 2015

The Sisters of Mercy have a very intentional and active network around issues of aging and aging services for their own Sisters.  The individual in Omaha who is the staff person responsible for the overall program for the retired Sisters for the Mercy Sisters' West Midwest Province is Kris Sullivan, MHA, BSN.

Kris told me not too long ago that they (the group in Omaha, I believe) are looking at and working on what comprehensive professional preparation and continuing education should be provided for those individuals, lay and religious, who serve their retired Sisters in unlicensed settings where there are not federal or state regulations to guide them.

I invited myself to Omaha because I’m eager to learn about the thinking and the work on this ‘curriculum’, and the programs that are part of daily life there for the Mercy Sisters in Omaha. My knowledge of Kris, gained through a few phone calls and browsing their website has revealed a woman who is well prepared academically for her position and who brings such great energy and passion to her work.

Early this evening I went to Kris’ LinkedIn page and found the following ‘comment’ written by a person who regularly visited the Sisters there at their convent.  I include it here because it reflects such positive images of what life must be like for the Sisters and the staff at that Mercy convent. Clearly the scope of the work there goes far, far beyond “good (physical, nursing) care” and embraces every aspect of daily life.  I’ll share my experiences here when I return on Wednesday.

“Comment” on LinkedIn Page

I was a weekly visitor to retired Sisters of Mercy that I worked with when I was an elementary principal. I saw firsthand how Kristine and her staff took care of every need for these Sisters from health care and accommodations to activities and entertainment. Kristine put together a fantastic staff, provided needed training, supervised operations and did so with respect for both her staff and the sisters for whose care she was responsible. Outstanding administrator, great person.

Friday, June 5, 2015

When you see the picture of this elder, are your first thoughts "loss and diminishment?

© Imelda Maurer, cdp  June 5, 2015

This is Sister Adrienne Marie, a Sister in my Congregation of Sisters of Divine Providence. On Sunday she will note 75 years as a Sister of Divine Providence. This is a beautiful picture of a beautiful person -- beautiful inside and out. This 90-something-year-old woman reflects life, vitality, warmth, and a deep relational capacity in this picture. Thank you, Sister, for providing such a positive, affirming view of what aging really can be. On to Sunday's celebration in our beautiful Conventual Chapel!

Wednesday, June 3, 2015

“We are in the midst of re-aligning our practices with our mission... ”

© Imelda Maurer, cdp  June 3, 2015

“We are in the midst of re-aligning our practices with our mission... ” Thus read the first line of a letter to LeadingAge HR Listserv earlier this week.  It struck me as quite a significant statement. The writer was seeking information from her peers about a particular program in her community that clearly is valued precisely because it is aligned with her community’s mission.

“Mission-driven” is a term that has always stirred me, particularly since the beginnings of my work in aging services.  For me this term means that beyond the Mission Statement that may be framed and posted in the lobby and included in every marketing brochure, the mission is the wellspring of every practice, every policy, and every procedure in the workplace ‘where the rubber hits the road.’ Of course in licensed communities, many regulations frame policies. But the mission and values of the community should be wrapped around the technicalities of those regulations.

An exciting reality for me is that the mission of the community, its values and philosophy, in so many instances parallel the spirit and letter of the federally mandated minimum standards of care, ‘the regulations.’  If you are connected to a licensed aging services community, take a few minutes to see if you can discover those parallels, particularly in the areas of Quality of Life, Quality of Care and Residents Rights.

For Sisters and their staff who live in or serve Sisters (by election or by appointment) in a convent setting  that is not licensed, the parallel with these non-binding regulations is so evident.  We need only to read our documents and our Congregational mission statement with new eyes, the eyes that see the provision of aging services as closely aligned with justice, mercy and compassion. I invite you to read your documents again -- with new eyes.

Tuesday, June 2, 2015

“Best Practice”

© Imelda Maurer, cdp  June 2, 2015 defines best practice as follows:  "A method or technique that has consistently shown results superior to those achieved with other means and that is used as a benchmark. Wikipedia’s definition adds this: “In addition, a ‘best’ practice can evolve to become better as improvements are discovered”

In a way the concept of transformative culture change within aging services organizations can be seen as a systemic ‘best practice’. The work of Sister Lucy, as a leader of Pennybyrn at Maryfield reflect this.  Pennybyrn is a continuing care retirement community near Greensboro, NC.  Although the “facility” had deficiency-free surveys as a matter of course, Sister Lucy felt that something just didn’t feel right. Along with some of her staff, she learned of the Household Model at an annual conference of the Pioneer Network.  Their organization was in the midst of major architectural renovations and the household model made perfect sense.  Pennybyrn moved from a good institution caring for elders to HOME!  still serving elders with the same clinical proficiency, but at HOME! not in an institution. 

The transformation at Pennybyrn was/is systemic because transformational culture change is not experienced just because certain programs or policies are part of the organizational life.  This transformation is the result of a shift of consciousness, a shift in thinking about aging and aging services, about organizational leadership and how it is exercised not just by someone or some few who hold a title, but from within the total circle of staff. A successful shift will result in a positive new way of life for staff and for residents.

Interestingly, even though transformational culture change cannot be equated with the presence of certain programs or policies, within those organizations moving toward culture change, certain “artifacts” are usually present.  Karen Schoeneman and Carmen Bowman developed the “Artifacts of Culture Change Tool” in 2006 which is available here.

This is a lengthy document, made so by the wealth of information it contains. In addition to providing the free-access tool (pages 22 – 31) it provides the rationale for including the various areas of nursing home life that make up the tool. There is also a section on topic-relevant research references and a general bibliography.

If you look at nothing else, study the tool.  It is not a government tool, or an enforcement tool. Finally, in the words of the authors, “The tool affords the opportunity for an individual home to gauge its progress and do its own benchmarking of where they are on a culture change journey.”

So there we are, back to where we began:  best practice as a benchmark and as part of a journey, an ongoing journey of transformational culture change, whose practices can evolve to become better as improvements are discovered

Monday, May 11, 2015

The Culture of a Community

© Imelda Maurer, cdp May 11, 2015

Yesterday I posted “Simply Caring” which included a powerful, simple picture with an accompanying commentary.  I posted that entry just hours after learning that the woman on the left, Dolores, providing a shoulder and a place of rest and comfort, had died earlier in the day.  That news came to me via an email from Jan who quoted from an email message sent to all the staff from  Allison Dolan, the Nurse Manager for the community”

Dolores passed away today at 8:40am at St. Luke’s Hospital with her brother holding her hand. She will always be remembered as Ms. Marvelous, who consistently complimented you. We will miss her dance moves and smile.

Many aging services communities have some way in which the death of a resident is noted and ritualized in a way that acknowledges and honors the deceased while remembering that person’s unique qualities and gifts to the community.  Such ritualizing also serves as comfort to staff who also, if they open their hearts to it, experience grief and loss upon the death of one whom they had served with compassion and competence.

My reading of Allison’s message was that she is a professional who has not suppressed her human emotions or vulnerability to pain.  She nurtures and deepens the sense of community in acknowledging individual and communal grief over Virginia’s death.

Sunday, May 10, 2015

Simply Caring

© Imelda Maurer, cdp May 10, 2015

Several months ago I was invited by Jan McGillick, a social worker, gerontology professor and colleague, to facilitate an evening event at an assisted living community which serves persons living with dementia. Residents and family members who were present were invited to gather in the living room to talk about their experience of friends and friendship throughout their life. At the end of a fascinating experience, Jan escorted me through the house to the front door.  In the foyer we both saw a sight which was literally “a Kodak moment.” I took the picture which is here.


Hoping for permission, which was granted, to use the picture, I articulated for the family members of each of these women the tender, personal yet powerful message of the picture:

This picture reflects simply and profoundly the human capacity to care and the human capacity for mutuality and relationships at all stages of life.  Though the disease of Alzheimer’s may prevent proper verbal articulation of these capacities and needs, they can still be experienced and expressed, particularly if the physical environment and the philosophy of services facilitates and honors the movements of the human heart.

In this aging services community, the environment is intentionally focused on “home” where individuals feel secure and have a sense of belonging. The image shows that one elder is allowing another to lean her head on her shoulder. The smaller, petite woman wants to sleep, but she does not want to go to bed. The care partners know this particular preference of the resident and it is honored. In doing so, even if by happenstance, a sense of community and of caring is experienced by the second elder in the picture.

This picture is precious for more than one reason: First, in what the picture reveals, in the stirring of the human heart upon seeing it.  Secondly, it serves as a powerful model when used to reflect how principles of person-directed living can be lived out in a setting that is home and where spontaneity is a normal aspect of an elder’s day. The picture opens the imagination of those in the helping professions who only have images or experiences of an institutional, medical-model style of “health care” where task and staff convenience take precedence over the centrality of the person.

Saturday, May 9, 2015

A New Look at Thickened Liquids

© Imelda Maurer, cdp May 9, 2015

Dr. Alex Smith is featured in a fascinating six-minute video entitled, "The Thickened Liquid Challenge."  Similar to the popular ice bucket challenge to raise awareness about Lou Gehrig's Disease, Dr. Smith, San Francisco Veterans Administration Medical Center, challenges health care providers to take 'the thickened liquid challenge,' experiencing what it is like to drink your ice tea, coffee, coke, orange juice, or water with thickener added.  The video pictures several individuals as well as groups of healthcare professionals taking the one-time challenge. Among the responses was a comment that 'it tastes like paste.'

Dr. Smith said  very few of the health care professionals who were challenged to drink only thickened liquids for twelve hours succeeded in doing so. Smith weighed this reality against the fact that some persons, especially those living with dementia, are often prescribed 'thickened liquids only' for years!

Evidence from video swallow studies shows that thickened liquids prevent fluid from being aspirated into the lungs, rather than going into the stomach. Beyond that there is "no evidence in real life that putting someone on thickened liquids is more beneficial than harmful." There are some harms associated with thickened liquids, one of which is dehydration!

The final decision, Smith says, should be a very individualized one.

I highly recommend viewing this informative, well-done video here.

Monday, April 6, 2015


There was a letter to the editor in the April 6th issue of the New York Times from a physician, a geriatrician.  Dr. Barry Farkas’ letter refers to an earlier NYT feature article on adolescents facing death and having a say in how they want to live those last weeks and months. Dr. Farkas makes this point: “Language is so powerful that it not only reflects what and how we think of things, but it also directs what and how we think of things.”  

I've written before in this blog about the power of language and the conviction that if we change our words we can change the culture.  One obvious example of how the broader culture profoundly acknowledges the double function of words (to both reflect and to construct our concepts) is in the totally unacceptable use of the “n word” under any circumstances. Well and good.

In our society where ageism is so deeply embedded in the culture that we don’t recognize it, it behooves us to examine the words we use about aging, older adults, and aging services. Let’s look at a few terms that are still too prevalent in aging services communities:
If you need supportive services, do you want to move in to a community that provides those series, or do you want to be admitted? Clearly, one is admitted into an institution: a hospital, a university, the legal profession (‘admitted to the bar’).  If we want our nursing home to be HOME, do we admit new residents or help them move in?
In many nursing homes, meals are prepared by the dietary department.  What if we said food services instead? The food already tastes better, and the meal time seems more like the social act that dining really should be.
If a person in a nursing home needs assistance with meals, is that person’s dignity better recognized by describing her as a feeder or as Sharon, who needs assistance with her meals?
Nursing homes sprang up in our country from two pre-existing institutions:  the county almshouses and hospitals.  Gawande addresses this historical reality well in his book, BEING MORTAL.  It’s time to move our thinking from nursing home as institution to nursing home as HOME.  One way to initiate that move is to consciously choose our words because “Language is so powerful that it not only reflects what and how we think of things, but it also directs what and how we think of things.”  

Tuesday, March 3, 2015

Which Side Are You On?

There’s a new book out entitled “The Age of Dignity” in which the author makes the point that America had better get ready for the “elder boom”, referring to the 10,000 “baby boomers” who are turning 65 every day in the United States. The book addresses the reality that by 2050, 27 million Americans will need varying degrees of supportive aging services. 

In a recent National Public Radio interview, Ai-jen-Poo, author, says the following: “The way that we approach aging and dying in this country is from a place of scarcity and fear.  And what this book is saying is that getting older is actually a blessing and an opportunity.  Living longer is about loving longer, learning longer, teaching longer, and connecting longer, if we figure out the supports and infrastructure to make all of that possible.”

So Ai-jen-Poo says we Americans approach aging and dying from “a place of scarcity and fear.”  Doesn't the term diminishment fit here?

After articulating the positive aspects of aging, the author says that all this is possible if we ‘figure out’ the necessary supports.  Doesn't the term Culture Change fit here?

What do you believe about aging?  Do the concepts of diminishment and decline so totally encompass your view of aging that you see it as a time defined by depression and loss?

Do you see your future in a traditional long-hall nursing home
n  That is run like a mini-hospital,
n  Where one’s days are determined by staff-imposed schedule and staff convenience,
n  Where a common sight is slumpers in wheelchairs -- those are residents who have totally withdrawn within themselves because the external environment is unbearable,
n  Where meal time is spent in interminable waiting at assigned tables, where waiting time and meal time are spent in silence,
n  Where “Activities” have replaced what really gives life: Engagement?
If you see aging and/or aging services in the ways described above, then you are among the multitude of Americans who view aging from scarcity and fear.

What are you willing to do to change the culture of aging and aging services in our society? If one is not changing the culture, s/he is sustaining it.

Come on, Prophets, let’s “sing to the lamentations the music that is in the Heart of God.”  (Carol Zinn, CSJ, Presidential Address, LCWR Assembly, August, 2014)

Wednesday, February 25, 2015

“I’d Step in Front of a Freight Train for Her.”

Those words were uttered by a woman as I spoke with her by phone recently.  This woman, whom I’ll call Jean, was addressing her conviction that we all need advocates to get through life well. She talked about her own advocacy in companioning her mother through the later years of her life as she battled dementia and faced ever-increasing need for supportive services.

And now Jean’s good friend, for whom she would ‘step in front of a freight train', is herself in a nursing home. Jean is a good role model for all of us.  Part of loving our neighbor as ourselves – one of the two great commandments – is being the advocate for our neighbor when he/she is more frail, more vulnerable, more marginalized and thus more dependent on another for his/her voice to be heard and honored. The advocate is the voice that demands:
       “I’m in charge of my own life.” 
       “I want choice to be a part of my day regardless of my mailing address.”
   “My life in a nursing home must be about more than safety and physical care. Rather, my life must be about purpose and meaning, about relationships, about beauty. All these aspects of life call from within to be present, honored and active regardless of one’s mailing address.” 
   “Moving to a nursing home should not feel like an imposition of a life sentence.”

Thank you, Jean, and all of you “Jeans” around the globe who hear that moral call of responsibility for the dear neighbor.

For whom are you called to be the advocate, to be the voice for the voiceless?  Who will be there for you when and if you need an advocate, a voice for you when you cannot speak?

Tuesday, February 10, 2015


I have reviewed this excellent book recently on this blog. I received an email just this morning that a documentary has been produced and is being shown TONIGHT February 10th on FRONTLINE, PBS,

This is a succinct statement of the book of the same name by Atul Gawande, MD and the Frontline documentary. “The true challenge is combining all our medical knowledge and skills with the art of communication, to allow our patients to choose how they want to live—all the way to the end.” (emphasis mine)

Check your local PBS station for exact scheduling.  If you miss the live TV program, you can watch this and many other Frontline programs by going to the website here

Friday, February 6, 2015

The Morning Report

Do you remember that musical piece from The Lion King? I don’t have the talent for making my ‘morning report’ rhyme, but my reading this morning from news articles I get as a member of Leading Age seem to focus on a couple of important concepts around aging and aging services that I want to share here.

First, LeadingAge posted a video which addressed the question: “Should continuing care retirement centers expand into home and community based services (HCBS)?” Along with lots of good business and finance-related information, the speaker made the point that using HCBS allows the older person to remain in his/her own home.  And, the speaker continued, ‘That’s what everybody wants.’ No surprise there! The number of Americans living in nursing homes is not keeping pace with the growing number of Americans 85 and older. It is because there are more options for services outside the nursing home, options that allow the individual to remain at home and receive needed services there!  Additionally, HCBS services are less expensive than skilled nursing home services. That sounds like a win-win doesn't it.

In a way following from that very concept about the primacy of HOME, LeadingAge posted an article about a particular member organization where there is a focused emphasis on language. I’ve written about the impact of the words we use before on this blog.  These are the two articles: “If You ChangeYour Words You can Change the World” and “What’s in a Name

The LeadingAge article spoke to the reality that ageism is alive and well. This executive is quoted at the very end of the article about how our society generally views and thus treats elders: “It’s the last group or class of citizens in this country that we say it’s OK to institutionalize (emphasis mine) and it’s OK to marginalize  (emphasis mine) — in advertisements, movies and popular culture,”

In truth ageism is so embedded in our society that we do not recognize it many times. -How many of us accept without question policies that impact us personally and that are operative at a certain chronological age?  Are you aware of any such policies in your life?  I'd love your comments!

This prejudice of ageism should be rejected and protested with as much sense of outrage as we reject and protest racism or sexism.

Wednesday, January 28, 2015

Mystery and Transformation – Not that “D” Thing

Earlier this morning I was re-reading Carol Zinn, SSJ’s Presidential Address to the 2014 LCWR Assembly. The Assembly theme was Holy Mystery Revealed in our Midst. Carol points out that Mystery resides in the Heart of God and is revealed “to those of us who put our ear to God’s Heart, listen carefully and follow freely no matter the cost.”

Carol’s references certainly refer to Religious Life as we are experiencing it today. We are in a state of great shift. In twenty years there will be a whole new face to religious life in the United States, both literally and physically.  But as I read Carol’s address, I see the promise of Mystery, the promise of Transformation even when the way is not clear.  The image of the chrysalis kept coming back to me with its unexpected and mysterious transformation into butterfly.

Yesterday I started to read another article, this one also about religious life. I didn't get past the first paragraph, though I will have to go back to it. The Sister-author begins, “In being asked to reflect on congregational diminishment ….” Admittedly, when I see the word ‘diminishment’ used in the context of religious life, I have a visceral reaction not far from vehemence. Why? Because diminishment means a lessening of. The Merriam Webster Dictionary provides this definition of diminish: “to be or to make seem to be smaller or less important.”

Sisters in the United States do not believe that religious life is less important.  We believe this in the face of fewer new members. The broad response to the Apostolic Visitation was that we Sisters grew in solidarity and in confidence. There is a sense that we are stronger now than at the beginning of the Apostolic Visitation.

For these reasons and more, we do a great disservice to ourselves and to those others who are the receiver of our word ‘diminishment’ when it is said or written within and/or among congregations of women religious so freely and without any descriptive qualifiers.  When the “d” word is used, are Sisters talking about a smaller number of members?  If so, then “diminishment of numbers” is the correct description and terminology. Are Sisters talking about the higher median age, the changing proportion in the number of those Sisters who are “retired” with those who are in “active ministry?”  I fear this is the case most of the time. I fear that too many Sisters really do – at least subconsciously – view the process of aging, which gives us our higher median age, as a time of loss and diminishment. That’s what all of society yells at us from every conceivable source.

As a gerontologist, I bring the good news that such a view of aging is totally off base. That’s grit for lots more blog entries!  Today, I put the “d” word and its unqualified, unconscious use within the context of Carol Zinn’s Presidential Address.  What we too readily see as Congregational loss and diminishment is rather Holy Mystery. We are called by the signs of the times to discern what is emerging, to live into a future we do not know, but which we trust because we have our ear to the Heart of God. The colorful, lively caterpillar with voracious appetite may seem to be regressing as it spins and hides itself in a colorless, hard cocoon. And that caterpillar, living in darkness, cannot imagine the beautiful creature that will emerge totally transformed.

We are in Holy Mystery. No matter how dark, no matter how empty the answers to our questions come back to us, we are emerging into the future. Our task is to be certain that our ears are at God’s Heart, that we “listen carefully and follow freely, no matter the cost.”

Sister Carol Zinn’s Presidential Address can be accessed  here

Friday, January 16, 2015

HIPAA, Community and Privacy: How to Honor it All Part Two of Two

Yesterday I shared the story of Fred and the medical emergency that he experienced, noting that when asked by a neighbor what had happened to Fred, I could say nothing.

There was another event in that same setting which involved a non-emergency situation. “Joe” was scheduled for hip replacement. When I visited with him and his wife, I asked Joe what if anything he would want the other residents to know about his impending hospitalization. Joe asked me to tell the residents of his upcoming surgery and to ask for their prayers.  Not too many days after his surgery, Joe’s wife called to say that her husband had been discharged from the hospital that very afternoon and he was home! I went over to their cottage for a short visit, delighted to see Joe’s recuperation coming along so speedily.  I offered to deliver their evening meal, saving Joe’s wife a trek to the dining room in the dark.  As I was leaving the kitchen, two meals in tow in a large plastic bag, I noted to all the residents that my bag held supper for Joe and his wife, that he had just returned from the hospital. There was a spontaneous burst of applause from the resident-diners.  What a marvelous expression of community

In another setting, an Assisted Living Community, “Shirley”, a diminutive, warm and gracious person, required surgery at the earliest possible date. Unmarried, Shirley’s cousin and niece were there for her and they were coming to take her to the hospital mid-morning. I announced to the residents at breakfast, with Shirley’s agreement, that she would be leaving around 10:00 for the hospital.   I had suggested to the staff earlier that they may want to wish Shirley well if they saw her that morning.  What happened was an amazing show of solidarity and bonds of community.  When Shirley’s family members arrived, I went with them to Shirley’s apartment.  When we turned from her apartment  down the corridor to the front entrance, there was a virtual “honor guard” of about a dozen residents and staff, each wishing her well, promising prayers and telling her to hurry and come back home! Shirley was moved beyond words, as were her cousin and niece.

Not everyone would want that attention and may opt for ‘no announcement.’  But the option was offered -- that’s the crux, I believe – and Shirley welcomed it. 

Lastly, I share a story surrounding the death of one of our Sisters three years ago this week. Madlyn was a good friend and also a classmate since high school days.Our Superior, Sister Ann, posted notes about Madlyn a few times during Madlyn’s last week of life. Of course Ann shared what Madlyn wanted shared. What a comfort it was to read Ann’s words that Madlyn (who at that stage did not want company) was at great peace, to read that she was having dreams of “beautiful flowers and loving people.” We were able in a very real way to accompany Madlyn during those sacred last days and nights.

Carter Williams, noted social worker and activist in transforming the culture of aging services reminds us that “relationships are at the heart of life. And that does not change as we age.”

Taking that proactive step of asking an individual what she wants the community to know, what she wants the family to know, acknowledges and honors the place of relationships in the life of that person, and her place in the life of the community. If information is shared within that circle, relationships and bonds do undoubtedly deepen. Community is expressed, experienced and deepened in those situations where the affected individual intentionally chooses to share, with limitations that she herself sets, something about her journey.  For  community members, we have shared a common journey in some way or another, more intimately or not.  When the concepts of “privacy” or “HIPAA” are erroneously applied, we all suffer a loss.

Thursday, January 15, 2015

HIPAA, Community and Privacy: How to Honor it All

When I was at our motherhouse two weeks ago, one of the Sisters with whom I lived in community some forty years ago told me that she was going to have a particular medical procedure done later that week.  She feared the results would be a diagnosis of cancer. Yesterday she wrote to me that indeed that is exactly what the procedure revealed. This morning this Sister posted that news on our Congregational/Associate electronic bulletin board, indicating a surgery date and asking for prayers.

In my e-mail to her earlier today, I include this note of thanks along with my promise of prayers:

I want to thank you for sharing your news with us.  I know that privacy is a word bandied about much, and many times I feel that some distortion of its meaning keeps us isolated from each other.  Each of us has the right to decide what and how much we want to share with any individual or group.  Your sharing enables me and so many other Sisters and Associates who know and love you to accompany you more closely and meaningfully on this journey. It deepens our bonds of community and sisterhood.  Thank you.

Privacy is highly valued in our culture. Additionally, if we are healthcare providers, the legal aspects of privacy under HIPAA* come into play and strictly limit what health information can be disseminated and to whom.  Note that HIPAA’s legal obligations bind health care providers, not family members or friends. What binds the actions or words of family members, friends or any other non-healthcare provider is the affected person’s right to privacy.  This honoring of privacy is an ethical issue of long standing, binding non-health care providers eons before HIPAA was ever dreamed of.

As a director of an Independent Living retirement center, I remember an emergency event which entailed calling an ambulance to the cottage of one of the residents. As the ambulance pulled away, one of the neighboring residents came from his cottage to ask what had happened to “Fred.” Of course I could not provide any information; the resident understood that.  That particular incident resulted in Fred’s hospitalization for some time. When he did return home, the residents gathered round his table in the dining room, long after all the dishes had been removed, to share good conversation and express their gratitude for his return home.  It was an expression of community.

While honoring both the legal constraints of HIPAA and the ethical right to privacy, there are pro-active steps that can be taken in health care situations that deepen the bonds of compassion, community and friendship.

Read about that tomorrow

*If you want to know more about HIPAA, the Health Information Portability and Accountability Act, go here

Tuesday, January 6, 2015

I Just Got Called a Little Old Lady!

San Antonio International Airport
January 6, 2015   

I was first in line to approach the next available agent to get my boarding pass. An agent became available, but I could not move immediately because a family with several young, well-behaved children was crossing  directly in front of me. I think I automatically smile when I see children, and I was probably smiling when the agent caught my eye.  A woman who, from her accent, I later surmised might have been from the Caribbean Islands.  She smiled at me and said for everyone to hear, “There is a smiling little old lady, a sweet grandma.”

To say I was caught off-guard would not be a hyperbole. I approached her station, still smiling, and said, “A little old lady I may be, but a grandma I am not. I am a Catholic Sister.”  She was gracious and efficient in getting my board pass for me.  She was very pleasant and there was no doubt that her spontaneous description of me was not in any way done with a demeaning or pejorative intention. As I thanked her, I asked her, because I had forgotten, what words she had used to describe me as a grandma.  She said, “Sweet. Someone who bakes cookies for her grandchildren.”

For my readers who have never seen me in person,  I’m 5”6” -- 1 ½” shorter than in my earlier years. I’m not svelte, but I’m not obese. I’m not little.

But the airline agent’s use of this often-used phrase never refers to these physical characteristics. Rather it reflects the perceptions of age in the eye of the viewer in the context of our society’s view of aging and older adults. “Little old lady” lumps all older women together as a group of women with common characteristics. One little old lady is like every other little old lady. We've all heard stories, have perhaps, for shame, even told them, with lines that begin, “There was this little old lady” or “there were two little old ladies ---.” Images and concepts come to mind when this phrase is used or heard. Think of the descriptive words that come to mind when YOU hear “little old lady.”  Do you automatically think, for example, university professor, immunologist, cancer survivor mentor, world traveler, executive director, or are the images more like behind the times, not really too ‘swift’, over the hill, living life with very limited hopes or dreams, etc.

After I got through security, I HAD to call a few of my friends and relate this experience. My telling of it involved much laughter on both sides of the telephone conversations.  I’ll have to ponder the why of that more deeply, but my first thoughts are that it is just my spontaneous response to the actual experience of this totally unexpected event coming from a stranger.  And this woman had no awareness of the negative, pejorative implications of this phrase. I do feel very good that I didn't feel insulted. I’m happy I laughed and shared this experience. I feel good that I can say without embarrassment or apology that I am an older woman – but not as old as I’m going to be, God willing!

Now this older woman has a plane to catch!

Friday, November 28, 2014

A wonderful Thanksgiving experience: it’s all about relationships

Thanksgiving morning I called my sister-in-law to wish her a Happy Thanksgiving.  Linda (not her real name) has been living in a nursing home for about a month now. She is temporarily wheelchair-abled as the physical therapy team works with her daily to help her regain more independent skills.

Three years or so after my brother’s death in 2008, Linda was invited to live with her daughter and son-in-law. They remodeled their home to create what is called in San Francisco, at least, an in-law apartment. She made the decision recently to leave that cozy, comfortable, welcoming in-law apartment following an episode about which she later told me, “If I had been there alone, I could have died. Thank God my daughter was there.”

Linda seems very content; she misses her home, her own nest, but has told me more than once she is convinced that the decision she made was the right one. She is happy to know that should any issue arise, help is at hand. In her own words, “If my daughter and son-in-law had not been home when that last emergency happened, I would have died, and I would have died alone.”

My call to Linda Thursday morning went to voice mail where I left my greetings. Almost immediately, Linda called me back saying that she was visiting with a woman who lives across the hall and she could not get back to her room and her cell phone in time. My telephone visits with Linda can easily go for twenty minutes or more, and I was in no rush yesterday morning.  However, after five minutes, Linda apologized for having to cut the conversation short, but, she said, her neighbor across the hall was waiting for her to return.

I absolutely loved that response!  Obviously, Linda has relationships in that nursing home that are important to her!  Carter Williams, noted geriatric social worker and aging services advocates, reminds us that ‘relationships are at the heart of life’.

I don’t know much at all about the nursing home where Linda lives. But I do know that whatever the structure, however institutional, task-directed or person-directed it is, Linda has developed relationships in that nursing home that mean something to her!  She cut my Thanksgiving call short to honor and enjoy that relationship. I can’t think of anything that would make this day of gratitude more relevant or delightful to me. I wish that same gift of relationship for every person living in a nursing home.

Thursday, November 20, 2014

A Review of "Being Mortal: Medicine and What Matters at the End"

I began this book with great enthusiasm, and closed it after 282 pages stirred by many of Gawande’s insights:
1.    The failure of the institutions of modern medicine and healthcare to focus on enhancing quality of life at every step of the way;
 2.    In the case of serious, incurable conditions, it is essential to know when it is time for ‘medicine’ to resist using every possible intervention at the cost of great pain and only prolonging the dying process.
3.    We want to control our lives, to “remain the writers of our own story.”

Gawande repeatedly makes the very central point that what is essentially important in life for us now will remain important regardless of our age. The dream and hope is that we will be allowed the autonomy necessary to “remain the writers of our own story.”

Just a few choice quotes that reflect these important insights?

From pages 140 – 141:
All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties (loyalties meaning ‘purpose’ here).

. . . . “Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.”

Gawande speaks of “the dying role.” It is a concept we should think more about, I believe.
Page 249
“Technological society has forgotten what scholars call the ‘dying role’ and its importance to people as life approaches its end. People want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms.  This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame.”

This book is worthy of reading, reflecting on, underlining, and even dog-earing the special pages, Each of us mortals should discuss these concepts of what makes life good, what we want – beyond medicine and the institution – at the end with those we appoint as our medical power of attorney.

For those of us who work in the field of aging services, this book and its grandly human view and articulation of what we want “at the end” merits discussion in staff meetings accompanied by serious evaluations to assure that our policies and day-to-day operational activities reflect and implement these humanizing concepts for those we serve.