Keeping occupation front and center of every interaction an OT practitioner has with clients and anyone else involved with a case is a form of advocacy. Advocating for our clients is a core tenet of OT standards of practice. But what happens if a practitioner believes, however sub-consciously, that elderly people in LTC have no "valuable" occupations anymore? Especially in the U.S., people who don't participate in paying jobs tend to be seen as less deserving of everything society has to offer. "Retired" is a status that carries a lot of ambivalence. One the one hand, the person deserves "rest and recreation" after years of toil. On the other hand, being "unemployed" means being "unproductive. "Unproductive" translates into an economic "drag" on society through "entitlement programs" like Social Security and Medicare.

How much of their clients' "unemployed" status clouds the attitudes of OT practitioners in LTC about the "value" of whatever their clients still want to do? Why would an OT practitioner risk unwelcome attention from The System by insisting that an elderly person's unpaid occupations have value if the OT practitioner doesn't believe it him/herself?

I don't know what the OT practitioners at Restive Acres really think about the people on their caseloads. I believe they care about them as human beings. But I doubt they can imagine their "unemployed" clients as occupational beings. I can see how my reader might consider that lack of imagination a form of ageism.

I left off last time with my mom grumbling about the task she was assigned in her first OT session at "Restive Acres."

There were two other clients sitting near mom in the therapy room. I didn't hear or see them talk to each other or with any of the staff in the room. One was working on a large puzzle; the other manipulating some blocks. The staff were chatting to each other.

OT1 came back to mom after a few minutes. She glanced at the few puzzle pieces mom had put on the table and walked away again without a word to either of us.

After a few more minutes watching mom seriously under-perform, I whispered to her, "why don't you see how much of the puzzle border you can put together before [OT1] comes back again?"

Mom whispered back, "but won't I get in trouble with [OT1] for not following her exact directions?"

Her question gave me pause....

A reader's comment on my 1/25/10 blog entry made me realize I left out some contextual information. I'll back up a little before telling you about mom's first OT session at "Restive Acres":

When OT1 arrived in mom's room, she addressed mom by her first name and stated her own. She then said, "I'll be working with you in Occupational Therapy today. Let's go down to the therapy room." Mom answered, "OK."

OT1 didn't say anything more. Mom is shy and doesn't initiate conversations with people she doesn't know well. Most of the journey to the therapy room was in silence. Even the person who emptied the garbage in mom's room engaged mom in conversation immediately upon entering her room! I interpreted OT1's silence as a lack of interest in mom as an individual, and therefore a sign that I needed to spoon-feed her information.

I recited my description of mom's normal life in under a minute, finishing just as we entered the therapy room. OT1 responded, "OK." I waited for her to ask a question or say something else, but she didn't.

OT1 then parked mom at a table and gave her a box of puzzle pieces. OT1 told mom to "find the border pieces", and walked away.

Mom listlessly fiddled with the pieces with one hand and fished out a few straight edges. She muttered to me, "I used to do this with you when you were 3."

Before I continue with the blow-by-blow account of my mom's experience with OT at "Restive Acres", I'd like to call your attention to something I just read.

A recent article¹ in the American Journal of Occupational Therapy (AJOT) describes how "an [occupational adaptation] approach provides the bridge between the application of clinical expertise, client-centered occupation-based therapy and the time constraints placed by payer sources."

The authors assert that "[t]he occupational adaptation (OA) framework...provides a basis for patient care regardless of setting...."

The client profiled in the case report "was disappointed that her occupational performance gains were not reflected in the biomechanical goals or biomechanical measures....Documenting progress through biomechanical goals...noted minimal gains, discouraged the client, and failed to demonstrate functional gains important to the client."

My blog entry Stringing Us Along illustrated a similar gap between "clinical measures" and "functional capacity."

The authors of the AJOT article were brave enough to try a different approach. They lament the lack of other published accounts of how to accomplish this shift in treatment perspectives. I assume they're referring to peer-reviewed publications. The more "informal" OT publications such as OT Practice, ADVANCE, and blogs written by OT practitioners feature many examples of holistic, client-centered, occupation-based practice in a constrictive reimbursement universe. Many of those examples can serve as a basis for trying to break out of one's practice habits and developing peer-reviewed articles about the experience and outcomes.

-------------------------------

¹ Jack, J. & Estes, R.I. (2010) Documenting progress: Handy therapy treatment shift from biomechanical to occupational adaptation. AJOT 64, 82-87

On my mom's first day of OT at "Restive Acres", I walked with OT1 and mom down to the therapy room. I described my mom's life up to and including the evening she went to the ER:

• Lives independently in a 1-bedroom apartment
• Apartment is in a senior community that has assisted living services available as needed.
• Scheduled van service to a variety of locations is included in her rent.
• Weekly cleaning service is included in her rent
• Makes her own bed
• Does her own laundry in the laundry room of her building.

* Occasionally pays assisted living aide to do it for her, so she doesn't have to wait around in the laundry room

• Cuts, colors and styles her own hair.
• Sets her hair in rollers every day before showering
• Regularly plays Bridge and Scrabble with friends; also enjoys Solitaire and crossword puzzles.
• Likes to read, but macular degeneration in both eyes, and a cataract in one, limits the time her eyes can tolerate reading.
• Goes to live orchestra performances with friends

- they take turns arranging for a taxi>

• Eats dinner most evenings in the restaurant that's located in the apartment building
• Goes grocery shopping once a week

* I drive her to the store as part of my regular visit routine

• Meal preparation she still does is very simple:

* Instant coffee with toast and butter for most breakfasts

- Boils water for coffee in an "instant-hot" electric carafe, not on the stove

* Occasionally boils or fries an egg in a pan on the electric stove.

* Doesn't own - or know how to use - a microwave

* Occasionally steams vegetables or heats leftovers in an electric skillet

* Lunch is usually a cold-cuts and cheese sandwich, fresh vegetable salad, or fruit and cottage cheese

Keep this list in mind as I tell you about mom's OT sessions to come.

I don't dismiss the difficulty of risking unemployment as a "reward" for being occupation-focused and person-centered. I don't know how long it would've taken to get myself fired for "non-productivity" because I got tired of the constant fights with my (offsite) supervisors before they did. I knew I wouldn't want that type of OT offered to me. I couldn't provide less than what I would want. Many OT practitioners deliver quality service in spite of everything. I admire and respect them. They're living proof that occupation can prevail.

I didn't expect the practitioners at "Restive Acres" to do anything beyond "basic ADLs". My mom didn't have any ADL deficits, per se; she was just weak. I figured any activity at all would help her regain her strength and stamina. As such, I considered OT at Restive Acres to be mostly an extra PT session, only with "ADL training" instead of rote exercises.

To put it kindly, the OT practitioners at Restive Acres were a bunch of underachievers.

Next time, I'll give you the same info. about my mom that I gave the OT practitioners at "Restive Acres." I'll then tell you what each OT practitioner did in response to that info. You're welcome to try to convince me - via the comments section of each blog post - of the occupational value of each OT practitioner's choices.

In September, 2009, I described my approach to providing OT to residents of long-term-care (LTC) facilities. My mom and I found out that "graduating" from a sub-acute rehab. unit of LTC is no less challenging. It didn't help that the OT department at "Restive Acres" was full of practitioners I consider a disgrace to our profession.

The first 6 therapy days at Restive Acres, a different OT practitioner showed up each day! At one point, I thought of the Scheherezade story of the magic bag that never emptied of food. Unfortunately, Restive Acres' "bottomless bag" of OTs didn't yield anything palatable. I might have forgiven the service fragmentation if each practitioner had delivered good OT, but none came even close.

In the blogs to come, I'll describe each day's "alleged" OT session to you. I'll name each OT practitioner we met with a number, but they were otherwise indistinguishable from each other in their lack of occupational focus. Almost worse, none seemed interested in mom as an individual. "Cookie-cutter therapy" is bad enough; but the OTs at Restive Acres make "cookies" with no "nutritional" value.

You know from my 9/8/09 post what I think of the state of long-term-care (LTC) facilities in general. You also know that I believe many LTC-based OTs seem to be selling our profession short. My experience with the LTC my mom was in did nothing to mitigate my cynicism.

Last time, I told you about how I chose the LTC ("Restive Acres") my mom entered for sub-acute rehab. Alhough my "insider knowledge" of Restive Acres was a few years old, I wasn't prepared for what mom and I experienced.

Mom arrived at Restive Acres from the hospital on a Friday afternoon. The Admissions Coordinator (AC) and I had talked on the phone during the transfer process. AC told me the first Care Conference for mom would be held that coming Monday. Once mom got settled into her room, I went looking for the Social Worker (SW). AC had told me that SW was a temporary replacement who had started just that week . "Oh, great!" I thought, "Just what mom needs - someone else who doesn't know what's what or who's who!"

I introduced myself to SW only as [mom's] daughter and handed her a copy of the document that gives me full Power of Attorney (POA) for mom. I asked what time Monday's Care Conference would be. I told her I planned to invite the Director of Assisted Living (DAL) at mom's apartment community to attend. SW said, "oh, the first Care Conference for [mom] won't be until the following Monday. The staff likes to have at least a week to get to know new residents first."

I said to her, "but why wouldn't the team want to meet right away when there's an involved family member available to help them get to know the new arrival?" SW answered, "that's the way it's always done here." I was instantly suspicious of Restive Acres' commitment to quality. I bit my tongue and said, "well, please let me know the time as soon as possible so I can give [DAL] a heads up." SW agreed.

I then introduced myself to the people at the nurses' station (again only as the daughter with POA). I let them know I'd be spending the better part of every day with mom. I said that I would be doing a lot of the things for mom that the aides normally would, "to make myself useful around here." I returned to mom's side, telling myself I should try to relax and "let the team demonstrate their excellence" in the week before the Care Conference.

For such a cynical person, I sure am naive! "Demonstrate excellence," my heinie!

To be continued.....

My mom's hospital discharge planner asked me if I had a preference for the sub-acute rehab. facility my mom should be sent to. I named the facility I'll refer to here as "Restive Acres." Over the course of 20 years, I had had three different associations with Restive Acres and its parent organization ("BigCorp"). Thus, I knew more about them than any other sub-acute/long-term care (LTC) facility in the metro area:

My first summer in Minnesota, I worked as a temporary OT at Restive Acres. I didn't want the permanent job they offered me, having decided that long-term care wasn't a setting that suited me. I took the job to pay the rent while I looked for an OT job that appealed more to me.

Four years after my stint as part of Restive Acres' OT staff, BigCorp's workers' compensation coordinator (WCC) chose me as the preferred Disability Case Manager (DCM) for their injured workers. WCC first met me after BigCorp's claims administrator (TPA) assigned me to a complex case with a Restive Acres employee. My "insider knowledge" from my OT stint there helped me develop a cost-effective and successful return-to-work (RTW) plan. The WCC asked the TPA to assign only me to their work-injury claims from then on. In this role, I got an entirely different look at how Restive Acres functioned. I also provided DCM services for injured employees at one of BigCorp's assisted living communities. BigCorp was in the process of developing an entirely self-contained injury management program. As the preferred DCM, I also had responsibility for training the WCC and his team in the finer points of disability management. I "worked myself out of a job" with BigCorp and Restive Acres within three years.

My third association with BigCorp developed from one of my volunteer activities. I was on the Board of an Adult Day Activity Center (ADAC) that decided to affiliate with BigCorp in order to get the advantages of economies of scale. The process of affiliation gave me access to many details of BigCorp's corporate structure and human resource issues. My role as BigCorp's preferred DCM was now 3 years in the past, so it was very interesting for me to see what had and hadn't changed since we'd "parted company."

I left the ADAC Board a few years ago; but still heard through my various contacts that Restive Acres was still considered one of the best LTCs in the area, if not the whole state. So it seemed like a no-brainer to have mom continue her rehab. there.

Oh, how the mighty have fallen.....

Secret Shopper

How much do you try to find out about your clients' involved family members? How soon? Do you ask them questions, or just try to learn about them through the conversations you have with them? How do you apply what you observe of their interactions with your client to your intervention planning? If any of your client’s "people" has a background in health or human services, does that affect the ways in which you engage them in your (and your team’s) processes?

For the first month of my mother's treatment for her ruptured aortic aneurysm, I chose not to volunteer the information about my own background. As a "Secret Shopper", I wanted the professionals to talk to me as a layperson. My mom was usually present, so I didn't want a lot of jargon flying past her ears. However, I was interested to see if anyone would be curious enough to ask about my level of knowledge once I started asking questions. During the 6 weeks mom was in institutional care settings, I received only three queries:

One respiratory therapist asked, "are you in health care?" When I answered, simply, "yes," he said, "where do you work?" I answered, "I'm in private practice as a Case Manager." He said, "oh," and that was the end of it.

A PT at the sub-acute facility asked me the same question, but didn't follow up at all on my simple "yes."

An OT student at the sub-acute facility asked me specifically if I'm an OT. However, she had a huge clue because I asked her a specific question about the academic program she was in. None of the OT practitioners at that facility asked me anything. The worst part was, no one asked me about my mom, either!

Mom's care in the hospital was so fragmented, I doubt having more specific knowledge about who they were dealing with would've made much difference. As it was, most of the people I asked questions of referred me to someone else. That someone was not likely to show his/her face on the unit again for days, due to being "on rotation at [another site]." I would ask the nursing staff and/or unit coordinator to get a message to whomever my question had been referred to. I would state that s/he could phone me in my mom's room to answer my questions: I was there from 7 am to 9 p.m. most days. Mom's surgeon was the only person who ever responded.

Clearly no one cared about how I fit into - or might contribute to - mom's care plan.

I expected more from the sub-acute facility, for reasons I'll tell you next time.....

When I left home for college, email not only didn't yet exist, but long-distance phone calls were too expensive to make very often.  I was a much more dedicated letter-writer than most of the people I wanted to keep in touch with, so I quickly got frustrated by how long I'd have to wait for a response.

I would write to my friends about my rather "soap-opera" life, but being pressed for time by a heavy academic load and a job, I soon started truncating the letters with a rather manipulative ending: "I'll tell you the rest after you write back."  As  generations of print and broadcast media already knew, "serialized" stories with "cliff-hanger" endings to each installment, kept people coming back for more; and that proved to be true with my correspondents. Most would reply quickly with updates of their lives and a plea to "finish the story."

Over the years, I wrote fewer letters and left out a lot of the "juicy details". Most of the writing I still did was formal: academic papers, or professional documentation and articles. These assignments had the accompanying constraints of content and structure.  My writing teachers had pounded it into our heads that we should never "orphan" an idea: they loved to scrawl in red pencil exhortations like "elaborate!" or "expand on this!."  I've danced to that tune all these years, and have transferred these ingrained habits to this blog.

You might have noticed that I've rarely referred to my writings here as "blogs". I call them "essays" or "posts" because most are too long to really qualify as what I understand "blogs" to be. I've also thought it's a lot to ask of you to read my long ramblings very often.  With the new year, however, I'm going to try to "blogify" my thoughts and write them more like the printed serials by 19th century writers like Dickens, Poe and Conan Doyle; the "radio serials" of my parents' generation; and the TV "soap operas" and "prime time dramas" of mine. The challenge for me is to create "cliff-hangers" at the end of each part, so that you'll want to return to find out what's next.  

The story I've been telling you since early November about my mother's journey through the U.S. medical system lends itself well to "serialization." Next time, I will pick up that narrative again, and let in unfold in shorter chapters.

”The moment they learned she's someone important they f[ound] the file[.]” - Bill Moyers Journal (PBS) transcript, 11/13/09

In the U.S. health care system, there is increasing emphasis on expecting people to take more responsibility for their own health and health care. This is a reasonable expectation in concept, but many care systems make it difficult for people to get the information they need to ask pertinent questions and/or get useful answers.

Even family members with some medical knowledge are up against the powerful juggernauts of medical egos, "chains of command", and information systems that take the privacy laws (e.g. HIPAA) to such extremes that the patients (or their legal representatives) can't get timely access to their own records. It's ridiculous to preach that people should take responsibility for their own health and health care when many players in the the U.S. system seem to actively conspire against giving them the tools to do so. Keep the stories ^1,2,3 I’ve been telling you about my mother’s medical “odyssey” in mind whenever you encourage (or exhort) your clients and their families to do more self-advocacy. If I had so much trouble, think how much worse it can be for people with fewer resources than my mother and I are privileged to have.

My knowledge and experience as both an OT and a Certified Case Manager (CCM) has been crucial to dealing with the problems rife in the services my mother has been receiving since she arrived in the ER on 10/31/09. However, too many of the people who were supposed to be managing mom's care were doing their jobs badly. Every time I left mom's side to try to take care of myself, something serious would go wrong. From 11/2/09 until 12/2/09, when I “sprung” mom early from sub-acute rehab. And back to her own apartment, I had to spend 18-hour days chasing down the people responsible for both the remedies for and prevention of further problems. I am not by nature a micro-manager; and as a CCM, I respect and rely on other professionals' areas of expertise and respective roles in the overall Plan of Care. But I also expect everyone involved to demonstrate competency, evidence-based practice, and person-centeredness. If anyone causes me to doubt him/her, I will seek a replacement, for the good of the person receiving services, related to me or not.

I have mentioned ¹ that everyone who met my mom commented on what a remarkable 92-year old she is. Mom was in a teaching hospital, so could provide an example of an "exception" to various clinical reasoning rules. But I think her very "exceptionalism" worked against her: no one took any action to prevent or mitigate what I consider to be developments of the "well, duh!" category: infections, pneumonia and pleural effusion among them. I reported all of my concerns - with detailed descriptions of the symptoms I – as someone who knew mom’s “normal” - was observing. Nurses and doctors repeatedly blew me off, reciting the lack of symptoms they typically wait to see as a reason not to respond to my requests for specific further analyses. "Wait and see" is asking for trouble in a 92-year old, no matter how uneventful the pre-hospitalization medical history. It took mom's attempt to get out of bed by herself to try to get to the bathroom to get the nurses and doctors to finally take me seriously about what I suspected was a urinary tract infection (UTI): the infection had created a sense of urinary urgency and made mom too confused to remember she had a catheter. Luckily a nurse happened to walk in before mom fell!

After mom spent 3 weeks in sub-acute rehab. (with repeated failures of continuity of care that I had to chase down and get remedied, both in the hospital-to-rehab transition, as well as within the nursing home), she had to be re-hospitalized. Another cascade of medical errors, oversights, dis-continuities and other outrages occurred.

As of this writing, I have spent more than two hours on the phone with one of the hospital's Patients' Representative, delineating everything I have observed and fought for. The Patient Rep. has stated to me that at least 3 of my complaints will be brought to the attention of the hospital's medical director, as well as the internal Ethics Board. The Patient Rep. also knows that I am in the process of reporting 3 doctors to the state medical board; and the hospital to JCHO and to my state's health facilities licensing board for what I consider to be neglect, ethical violations, abandonment and possibly malpractice,

However, I also gave rave reviews to the Patient Rep. about 3 hospital professionals; and detailed the reasons for my praise. One of the medical residents possibly risked her career on my mom's behalf. The other two professionals demonstrated unequivocal patient-centeredness in an environment that doesn't otherwise seem to understand the concept, despite posters on every wall describing the "components of Clinical Excellence" and including “patient-centered care” on the list. But for the 3 exceptions I encountered, everything in this particular medical system appeared to be provider-centered.

As a result of my extensive conversations with the Patient Rep., he asked me if I would consider serving on a Consumer Board that makes suggestions for improvements in services and systems. He said he'd never heard complaints, praise or suggestions articulated as well - or with as much relevant detail - as I had done; and he believes the Consumer Board could benefit from my participation. I gave him the link to my CV and said I would accept an official invitation from the Board. Too bad this opportunity had to come at my mother's expense; but maybe I can make a small difference for someone else's loved one.

¹ Saturday Night's Alright for Fightin': 11/09/09

² Trick or Treat in a Hall of Mirrors: 11/23/09

³ From Limbo to Purgatory: 12/07/09

Last time, I asked you to reflect on the concept of "informed consent" as I tell you the story of my mother's medical crisis. This installment asks you also, to reflect on the challenges of creating effective Advanced Directives. If you reflect on your own family's dynamics and perspectives on death and dying, how do you think any of you would respond to a situation like what I'm describing in this blog? Feel free to use my mother's story as a discussion-starter.

As my mother lay on the table in the Emergency Room (ER), quietly bleeding to death internally from a ruptured aortic aneurysm, the ER Resident and the vascular surgeon (VS) performed the dog and pony show I described in my 11/23/09 essay.

Finally, at 3 a.m., I'd had it. I'd been awake nearly 24 hours, with a physically demanding day before mom's crisis, and had no motivation to be polite. VS had left the Resident alone to take her turn, so I confronted her. I said, "I can't believe you would consider a "yes" from [my mom] to be informed consent when you keep leaving out the information that, when I remind her of it, makes her revert to her original refusal!"

The Resident tried to turn it back on me by saying "your mother is a really sharp woman, clearly has all her faculties and is capable of making her own decisions."

I shot back, "surely you know the difference between legal competence and situational capacity: she has been bleeding internally for hours; she's on narcotic painkillers; she's not consistently aware anymore that she isn't at home; and it's the middle of what would normally be her sleeping period! Her documentation says 'no surgery', '[do not resuscitate]' and '[do not intubate]'; and you have repeatedly heard her confirm verbally that she maintains those positions. What part of 'no' don't you understand? She's asked repeatedly only for comfort care as she dies; you claim she's competent; yet you keep ignoring her wishes that do not waver when she hears the complete information!"

With that, the Resident left the room and came back with VS. I turned my wrath on him. VS attempted to give me a "talking to" about what my mother "wanted." I snapped back that, at this point, they'd done such a thorough job of muddying the waters, there was no way they could characterize any consent she gave as "informed."

After another hour of arguing, VS announced he'd called in an endovascular surgeon (ES). This surprised and angered me further: If ES was an alternative, why didn't VS summon him after my mom's first refusal of VS' surgery? I saw this delay as VS failing to acknowledge the limits of his expertise; as letting his ego drive his clinical reasoning. I also characterized this sudden change in options as just another manipulative tactic. As a result, I was now "loaded for bear."

When ES arrived at 4 a.m., he cut to the chase. He offered what sounded like the same surgery that VS had been touting, but cited a significantly lower risk factor. He didn't mention any caveats, however, so I was suspicious. I asked him point-blank about the missing caveat. ES said VS' caveat was not part of his approach. I then asked mom if she considered the revised offer to carry an acceptable level of risk, and she said "yes". And that was that. Although I still questioned talking a 92-year old person into surgery, I couldn't say for sure that mom didn't understand what she was agreeing to. I let the surgery prep. proceed.

Seven hours after arriving in ER, mom had surgery that saved her life. When I met her in the ICU at 8:30 a.m., I noticed the ER Resident hanging around in the hallway and went out to see what she wanted. The Resident told me she was thrilled by how solid mom's medical condition was, and said in an awe-struck voice, "your mom is one tough old woman!" I managed to stop myself from snapping, "If she hadn't been so tough, she wouldn't have been able to stick to her guns and refuse the original surgery, so wouldn't have forced you to call in someone who had something more appropriate to offer her."

Mom's recovery has been tough, and she had to be re-hospitalized (that's material for future blog posts). I've asked her several times if she thinks it was worth allowing them to do surgery, and she says yes. I think her very "toughness" has, in some ways, worked against her, especially given the many things that have gone wrong.

I was prepared to say goodbye to mom forever in the ER. I'm appalled by the resident's and VS's blatant manipulation of the facts in order to get what they wanted. If I hadn't stood up to them, they never would've even consulted with ES. It's as if they were characters on a TV medical drama, fighting over the chance to do a damn-the-torpedoes procedure just for bragging rights. Those doctors tried to make me look like a daughter who couldn't wait to get rid of her old mother. Expletives deleted!

"I can explain it to you, Joey, but the understanding is up to you." - Dennis the Menace (by H. Ketcham), 11/23/09

What guidelines do you use when seeking informed consent from your clients? I have often thought about the challenges inherent in the concept of informed consent when interacting with and providing services for people who have represented a broad spectrum of cognitive abilities, literacy, educational level, and ability to communicate in English. Part of my responsibilities as a Case Manager is making sure my clients understand options presented by others well enough to make informed decision. But I recently witnessed an approach to obtaining informed consent that made me wonder how many professionals really understand the concept, much less the complexities involved.

As you know from my 11/09/09 blog., my mother survived the Emergency Room (ER), where she arrived around 10 p.m. on Halloween night. Given what went on, I might have to become superstitious as a result of that coincidence. This essay's title reflects the fact that I was appalled by the approach the doctors in the ER took with my mother.

The ER physician, upon diagnosing Mom's ruptured aortic aneurysm, told Mom he was summoning a vascular surgeon (VS). Mom responded, "No surgery." While waiting for VS to arrive, the ER doctor and the ER Resident took turns trying to talk Mom into accepting surgery if VS determined it could be done. Mom never wavered: "no surgery." Then it was VS's turn. His initial description of the surgery to repair the aneurysm included several caveats and risk factors. Mom remained steadfast, clearly and without hesitation refusing the surgery.

Over the next 6 hours (!!!!), as Mom bled out internally, VS and the ER Resident took turns trying to "sell" the surgery by repeating the offer, but leaving out the caveats and risk factors with each repetition. In response to the "sanitized" offer, Mom would waver: "well, that doesn't sound so bad. Let me think about it." I would wait a few seconds for the doctors to repeat the caveats and risk factors, but they never did. Instead, they'd just move towards the intercom to call the surgery prep team. So I would tell them "wait" and say, "remember, Mom: they said..." and I would recite the information the doctors had deliberately left out. The doctors didn't challenge the accuracy of what I was saying, nor attempt to clarify my statements, so I knew I had understood them correctly when they had first presented the "fully-loaded" information.

As soon as I recited the "downside", Mom would say, "well, no, then: I don't want surgery." Once again, she exhibited no hesitation, no equivocating: "no" was "no." As the hours ticked by playing this maddening game, I didn't know what to do. Since Mom was conscious and talking, and apparently was willing to consider some sort of surgery - just not what was actually being offered - I couldn't reasonably assert my authority as her power of attorney and health care proxy and simply insist that they respect Mom's original request to just keep the painkillers flowing, go away and let her die. Mom and I were in Limbo.

To be continued....