First Do No Harm

All Elder Care is Local & Personal

For the past several days I've been inundated with recent horrific anecdotal stories which mirror my own experiences through the elder care system over the past 30 years.

I've seen these same scenarios played out over and over again, in clinical pastoral care in geriatric wards in state mental hospitals, as a community activist and Grey panther in the tradition of Maggie Kuhn, building senior centers recruiting and training hundreds of volunteers, helping launch meals on wheels programs, directing senior affairs, and pulling together dozens of community organizations in a large urban environment.

I have uncovered fraudulent home health and per diem services providers, and struggled as nursing homes abused patients and an assisted living facility blossomed and collapsed - with malfeasance, misinformation, mismanagement -With A devastating impact on dozens and dozens of residents ... while management negotiated a very well funded departure/escape.

On one side of the scale are devoted, well informed,  genuinely caring family members, volunteers and well trained, sensitive and responsive professionals,

In the middle, are folks who are well intended, poorly informed, doing the best they can with limited self-reliant resources at hand - and are often too proud or embarrassed to ask for help.

On the other of the scale, are the scumbags who see elder care as a cash cow, an opportunity for theft, fraud, and con jobs on vulnerable and naive elders.  ... They seem unable to connect their destructive actions - and the likely impact on their own parents.

One underlying problem is that many of the most vulnerable of the aging population are isolated, trusting, and come from a place where your word is your bond... and they simply cannot imagine such dishonesty ... so they make easy targets

Ultimately... all elder care is local and personal. It is both our opportunity and our responsibility to engage ... to build caregiving partnerships, networks of support, to make the the relationship with the physician, nurse, LPN, CNA, hospital, nursing home, assisted living facility - personal - to be clear about expectations - to persist in our questions - and bump the issue up a level, and up a level, and up a level - if folks are not responsive.

It is also our responsibility to inform the licensing authorities and the quality care managers, and managing partners, and the bosses boss ,if what is being delivered is inadequate, inappropriate or placing the patient at risk. Not to worry Speak Up!

Don't take no for an answer. Be courteous, but persistent. Be well informed - not argumentative, Be a good listener, be present and accounted for in your caregiving, and expect the same level of respect, dignity, sensitivity, accountability and responsibility.

All elder care is local and personal ... you can make it happen!

Accessing & Sharing Your Patient Records- The Risks & Benefits

As we get older, we often have a group of related problems; Knees, ankles, hips, heart, lungs, kidneys, digestive tract, blood pressure, diabetes and vision, etc. Increasingly, if you have insurance, your primary care doctor refers you to a specialist in each of these areas, for the best treatment.  In that case, there is a medical document trail to follow. What is far worse is no trail and no connection. You see one doctor - get one prescription, and then don't tell the next doctor about the first one, the prescription the first one gave you.

It's good to get the best care. It's very bad - in fact it's very dangerous - when Doctors have incomplete, inaccurate, or the wrong information about you. Your medical information may be in another group or hospital computer system; so it takes doctors longer to get the info before they can take action on your behalf  ... if they get it at all. 

Often, delays in  receiving care are not their fault. Tests have to be duplicated at great cost and loss of time, because the previous physician hasn't sent over the records in a timely fashion. You have also had to sign a release to share your private medical records.

That is due to increasingly stringent rules and regulations preventing the abuse and inappropriate sharing of a patients health care records or HIPPA The Health Insurance  Portability and Accountability Act of 1996. Because of that, it is often very difficult for all of the doctors that you see, to be on the same page, each with the most complete and accurate information about you. UNLESS you are very proactive, and obtain, copy and bring with you in a folder , all of your patient notes, records, history, CD's of MRI's or CAT Scans, X-Rays and test results with each of the doctors you see - at each visit.

What is the down side of your doctors not having good information? If your Cardiologist is treating you for high blood pressure, and prescribes drug "A", and  she doesn't know your  Rheumatologist is treating your joint pain with drug "B", you might be putting yourself at great risk of a dangerous drug interaction.

Rule #1 Keeping treatments, diagnoses and medication secrets between your doctors and your caregivers ... is a guaranteed recipe for disaster.

The upside of your doctors having good information, includes: faster and more accurate diagnosis, reduced chance of dangerous combinations of drugs, the increased likelihood of your specialists working together; you will have a much better understanding about what is going on, you will have a great source of questions about what this means, what this test result means; and, a great opportunity for you, your family caregivers, andyour professional caregivers to be all on the same page at the same time. What a concept!

Have you had any questions, or do you have any personal stories - about your medical records - that others might appreciate or learn from?

 

You talkin' to Me? Intentions and Outcomes

It turns out, (Duh) that how we talk to aging parents, what we say, and how we say it, plays a huge part in their health. Dr. Jill Bolte Taylor speaks eloquently about how she experienced the way she was treated while recovering day by day from a stroke in her TED video, and her book My Stroke of Insight. Dr Taylor could not speak but she was deeply sensitized to her surroundings and has a photographic memory. Paula Spencer, reports on a study of  the impact of language and intention with Alzheimer's patients, in her blog on Caring.Com Currents  Decoding the Secret Language of Alzheimer's. If we treat parents or patients with disdain or disrespect - expect push back and poor outcomes!

Why is that not surprising?

Elder Care - with An Attitude This blog has repeatedly described the anecdotal evidence that when we connect to our aging parents or patients; by micro-managing, berating, manipulative power and control, being disappeared, disdain & disrespect,- or simply not listening and communicating - it has  plays a profoundly destructive role in patient health outcomes. This includes underlying issues of patronizing condescension, and most significantly: patients identified as procedures, described as a diagnoses not as individuals.

From the Horses mouth Several years ago, I slipped on a patch of black ice & broke all of the bones in my ankle.  I was taken to a large teaching hospital, and was promptly lost in the bowels of the institution in the radiology dept for four hours. There I was, wheeling myself around the hall talking to several dozen elderly patients lined up on gurneys.

"Hi what's your name, why are you here?" Many were frightened, confused and anxious.  It didn't help that the radiology techs would emerge from their lair, saying "I have the Hip, you have the GI Series, I've got the Chest - Nobody had a name, they were all procedures

The next morning after my surgery to line up all the pieces parts, the chief of orthopedics swept into my room with his retinue of interns. He explained the new 3D x-ray precise alignment procedure to repair my ankle. It was very complex and technical. At the end, he looked up at me and asked. Well, Do You Have Any Questions?

"Yes", I said, "What's my name?" and as he shuffled with his papers, I described the prior morning experience; where dozens of patients were nameless diagnoses and procedures. I asked him what was the mortality rate on admission for 65 & older patients, and whether talking to patients by name, listening and reassuring them, might have an impact on that outcome? He said it was an interesting question - for another day, and swept away. A number of interns stayed for several minutes. One said ... "that was really good!"

Flash forward 10 years. Very recently this same hospital hired a swiss company to conduct a huge patient quality care management survey - costing hundreds of thousands of dollars. The first item on their long list of recommendations to improve the quality of patient care and outcomes was: Use the name of the patient in addressing them, from the point of admission - to discharge  ... Amazing, I would have told them that for half that!

What do we want for outcomes?  The connection between respect, dignity, engagement, listening responsively, and the intentionality of our holistic engagement and improved patient outcomes is now beyond dispute. What we need to do is change our  behavior, our attitude, stop & look at our intentions - parent or patient. Are we present and accounted for? Are we all there? - or are we distracted and multiplexing. What do we want for outcomes for Marie, for Frank, ... for this patient.

Then we need to walk the talk - if we want the parent or patient get better ... not worse.

What do you think?

On Not Becoming an Elder Parent Hovercraft

She was aghast, she went to visit her elderly parents. They were OMG ... "Watching the news on TV". "It was horrible", she said, "All that terrible stuff in the news". Well, she said, (paraphrased), "We protect our children from TV news and violence - We should protect our aging parents from it as well!"

Really folks, What our aging parents don't need are geriatric care giving micro-managers, or hovercraft, who move seamlessly from micromanaging their children's lives, to micromanaging (read controlling) their aging parents lives. When we project our passive aggressive anxiety (I know whats better for you) onto our aging parents, it becomes micro-managing control, and when that happens - Bingo!  A self-fulfilling fantasy isn't it. The more the aging parent or patient is berated (however sweetly) for their behavioral non-performance, and failing to live up to expectations in the eyes of their hovercraft caregivers, the deeper in to isolation, depression they are driven - they simply withdraw and shut down, in self-defense.

Just the opposite is required, to the extent possible - peer to peer listening, respect, consideration, engagement, acknowledgment, reality based conversation, discussions of current events, books on tape, photo albums, lives lived, inviting shared opinions and insights, active engaging dialog ... even in the case of advancing Alzheimer's ... these conversations connect with experience and refresh memory, and a sense of well being. Good Stuff..

Of course when the aging parent responds in anger and frustration at their own profoundly difficult  and personal experience of loss after loss ... it is off putting. We want to paper it over with sweetness. The more difficult decision is to stay with the parent through these moments ... and move to the underlying sadness, vulnerability, embarrassment or fear.

You may find that creating a safe place to go there with your elderly parent is a journey of profound insight, humility, and redemption, not in a religious sense, but in a personally, mutually re-affirming moment with your parent being able to give up their long carried regrets about the past, or anxiety about what the future might bring.

Let everything happen to you, beauty and terror, no feeling is final. Rainer Maria Rilke

Have you ever experienced a elder care giver being a hovercraft. How did it make you feel? ... and how about the older person on the receiving end?

Managing Loss - Finding a Champion

Little did I know at 65, that the onset of edema in my left ankle, would lead me through a two year journey involving 13 physicians. A diagnosis of acromegaly, (excess  human growth hormone caused by a  small benign tumor on the pituitary gland - affecting 60 per million). And, a couple months ago - successful brain surgery, to remove the tumor.

The brain surgery was, however, the least of it. An hour an a half, a day in the hospital, then back at the office on Friday. The killer part, the absolutely devastating, grinding part - was both the excruciating pain AND the daily emotional slog of dramatically reduced mobility. For a guy who carried a 175 pounds (or more) every day in the mountains in his early 20's, to be forced to go up stairs one step at a time - was equivalent to an emotional load that was simply overwhelming.

Add to that navigating: (A) Was it caused by an earlier back injury NO (2 Neurologists nerves to the leg), (B) Was it impaired kidney function? NO (2 Nephrologists (kidney)  (C) Was it rheumatoid arthritis? NO) (Rhumatologist- but who suggested acromegaly). (D) Was it impaired heart and lung function, YES (2 Cardiologists - but for the wrong reasons) (E)  Was it lung function and sleep apnea YES (Pulmonologist (Lungs) who saw throat constriction and high pulmonary pressure but from the wrong source - and suggested acromegaly. (F) Was it acromegaly YES (2 Endocrinologists and a huge bank of tests) Finally, three Neurosurgeons (Two who did 3 of these surgeries in the last two years, and One who does six of these surgeries a week (guess who I choose?)

One key to both the health care navigation nightmare, AND to managing the emotional devastation of the loss of mobility, was  having an  incredibly supportive wife/partner, a primary care physician who made referral after referral, as the pieces came together.

Finding a Champion Ultimately, a single cardiologist - became a fantastic acromegaly detective, and champion. (we were on the phone together several times a week for months). One thing that drove his inquiry, was reading the research I provided, and realizing that many of the heart, lung, and debilitating side effects of acromegaly are permanently reversible - if you can identify, locate and remove the benign tumor.

This was a real object lesson in patient empowerment: doing massive web research, building a fully informed team (everybody got all of my current and rapidly changing test results, CAT scans, MRI's, and medical records - I felt like a bicycle courier) and finally - building and understanding a highly focused diagnostic, risk managed, surgical plan of care.

Bottom line: It all wouldn't have happened unless several physicians became real patient care management partners & champions. They welcomed my full active participation, research, document management. Ultimately they wouldn't wouldn't take no for an answer.

Have you had some serious slogging to do, with both physical and related emotional baggage that responded to your active participation in the management of your plan of care?

Who is in charge here?

Let's cut to the chase ...Who's in charge here? What do we want for outcomes.

Navigating a shared  plan of care often seems - and feels like - shadowboxing, a demonstration of chaos theory. A recent commenter on this blog raised the nagging frustration of being unable to detect true intention, or underlying motivation, in conversations with professional caregivers. In response to patient or family member statements of anxiety, concern  and not understanding, one is often left in a cloud of pat answers, feel good mush, and the discomforting appearance of intentional obfuscation.

I am reminded of the classical failed management approach. First, Delegate responsibility - Without Authority. And then, when it invariably fails ... Assign Blame.  A self-fulfilling, and un-fulfilling prophesy ... for the family care givers, the elderly patient and the physician. 

How can we be clear who is in charge and get the outcomes all we want.  Here's an idea. I assume we all want better outcomes.So invest in that!  Given a safe place to negotiate; I assume we all will work at it together - to the best of our ability.

First, lets drop the blame game. I have the opportunity, responsibility and authority, as the patient, (or the family member care giver - if the patient is incapacitated) to step up to the plate and share half load - if I want a holistic care giving partnership. However, telling everyone else it's broken - but the doctor - doesn't help the patient, the family caregiver, or the doctor.

Playing "ain't it awful" may feel good - but no one "gets better".

Second, we need to invite all of the stakeholders (family, patient(s), doctors, nurses, social workers and case managers in our plan of care, to the table ... (often called a case conference), and all must agree to leave their derringers (or covert agenda) at the door.

Third, we are each in charge of the pieces of the care plan, for which we both understand and agree to accept responsibility, and for which we agree to be held accountable. Together we agree on what we want for understood, realistic, incremental, achievable and measurable outcomes. What our piece of the plan is. To do that we need to build shared awareness, understanding, agreement, buy-in and ownership .... and that involves a lot of active listening - by all of the parties. A dialog not a monologue.

Have you tried pulling all of your network of care  giving resources together to build a shared, realistic, understood, and agreed upon, plan of care? How has that worked for you? Who or what gets in the way? What works, and what doesn't work for you?

Don't you think he is embarrassed enough?

Sometimes our listening is a passive accepting moment. This was an unanticipated "in your face experience". Recently, I was in a hospital bed recovering from a painful coumadin and leaking bruise hematoma encounter - adjacent an elderly neighbor. He was present and alert, on the way to a nursing home for rehab. We were separated by a couple feet and a privacy curtain.

It was about 2:30 am. I was wide awake - couldn't find a comfortable sleeping position. This night the "nurse" was an older CNA taking vitals. She turned on the light and began talking to my roommate: "Look at you... Did you wet yourself? Don"t you know better than that? I gave you a urinal ... why didn't you use it? Now I'm going to have to take the time to clean it it up. Why can't you control yourself? Look this is all wet".

Finally ... it was unbearable and I said: "Excuse me, but ... Don't you think he is embarrassed enough? Why are you berating him like that?" And then she laughed ... she was frustrated and exhausted from a double shift. But, that did not excuse or justify her behavior - it was inappropriate, it needed to stop.

The next day I spoke with several nursing quality training, supervision and social services staff at the hospital, they readily agreed it was inappropriate. They are discovering that frustration and exhaustion with staff often required to do double shifts when folks don't show up ... isn't limited to institutions. The social workers noted that these kinds of issues are also frequently appearing in their case management conversations with exhausted full time family caregivers.

With the high cost of institutional care, and a dramatic shortfall of professional caregivers, increasingly the load falls on the adult children of aging parents (that's us). Often both as employed  and 24/7 primary caregivers shuffling schedules at home, they provide the kind of caring, listening and respect that our parents need and deserve at home. But it is very hard, exhausting, and often unrelenting work.

So it really helps for us to recognize that a large part of our own care giving responsibility is taking care of ourselves ... as we move through our own frustrations (and some times anger) at the demands that 24/7 care at home extracts from us.

Giving ourselves permission to acknowledge that frustration and exhaustion - and how it limits our effectiveness - is very healthy. Exploring respite care, enables us to take a break, and get some perspective. When we return, we can listen better, and be more responsive. After all ... being there with a clear, open, caring, heart and mind ... is our first job.

How do you move through your own struggles and demands as a caregiver, so that you can be present and accounted for in your care giving. Any Experiences, Ideas or Suggestions?

Grief Work - Letting it be...

Dr Elizabeth Kubler-Ross transformed how we approach death and dying, by inviting terminally ill patients into the operating theater as the teacher. Amazing ...Terminally ill patients teaching physicians about listening, grief work and loss. We were not doing a good job of listening to terminally ill patients. Family and physicians would talk in the presence of an alert terminally ill patient, referring to them in the third person, rather than inviting them to participate. The patient was the problem, but not a part of the care plan.

It's hard to manage our emotions or loss together with a terminally ill family member and a professional caregiver. We feel a need to protect ourselves and our loved one. However, Kubler-Ross suggested that we would all do much better (including the terminally ill person) by making the end of life transition more inclusive of the patient, and more transparent.

What is griefwork?  All of us do grief work every day when we experience loss. I lost my wallet.  I was certain I hadn't (Denial). I couldn't find it and became very upset (Anger). I promised that if I found it I would never let it out of my sight again! (Bargaining). What am I going to do now, my credit cards, cash, id's - this is a hopeless (Depression). OK, I lost the wallet, call my wife, notify the card companies, change the locks (Acceptance). And often with this result: "What's my wallet doing in my computer case, I never put it there?"

Kubler-Ross said we all go through those steps, not necessarily in that order, every time we experience loss, (or believe we have), or anticipate that we will.

What is the most common experience among family & aging parents? It's incremental loss. Loss of friends, mobility, hearing, eyesight & money, etc. Can we learn how to manage our griefwork & loss more effectively?  We can help make it OK for the griefwork process to proceed, rather than trying to fix it, or deny it, or push it back because we are uncomfortable with it, or become a griefwork management hovercraft for our elderly parents (a recent skill learned managing adolescents).

At a personal level, if the mind is full of regret about the past - and anxiety about the future, there isn't any room to be in the present - which is the only place that we can actually share that very precious time that we have together. When we do our griefwork, we we acknowledge what is filling our cup, so we can gently empty it - in order to free some space for the here and now. Kind of like a,"build it and they will come" place.

This may include giving ourselves and our loved one access to real, present, accepting, deeply caring, heartfelt, raucous, gentle, frightened, quiet, celebratory, tender, anxious, joyful, reflective, fearful, tearful, peaceful or unsettled conversations; so that we and our loved one may do the grief work that we all need to do, to move on with equanimity.

Just like my Mother in Law, who said NO to extraordinary procedures. She was finally so profoundly relieved - she was literally ecstatic. We gave her one heck of a send off while she was here, and after she had passed. We gave ourselves permission to move through our individual griefwork, in order to celebrate her lifework with her. But she made the decision.

Of Course, as much as we want to; we can't go through someone else's griefwork, for them. Any more than we can eat, sleep, or go to the bathroom for them. But, we can start by listening. We can make it safe to go through the griefwork process that we each need to do, each in our own way, kneading the bread. Thats why it's called Grief Work!

A reminder, our griefwork is a process not a point. Our grief work is often a life long process, for those who live on. We can learn to give ourselves permission to stay with it & let it be.

Have you been able to move through the rough spots to to some kind of equanimity with your parents or your patients. Just how profoundly beautiful is that? Care to share?

Can we talk? Transforming moments in elder care

I was completing my clinical pastoral rounds at a state mental hospital. Where some of the tens of thousands of "mental health" patients were warehoused across the country, before they were summarily dumped on the streets without support systems on SSI, saving $10,000 a year per patient. But I digress.

I was assigned to a locked geriatric ward. I looked through the wire mesh glass window on the door to the ward. There, arrayed around the perimeter of the huge room, were dozens of frail elderly patients sitting in high chairs. They were tied to their high chairs with sheets.

I opened the door to go in, and was immediately overwhelmed with the stench of 75 years of vomit, feces and urine.  It was gut wrenching - literally. So I took a deep breath and walked across to a woman in one chair, and held on to her tray for dear life.

And then she said,"How nice to see you?" I was blown away. Here I was supposed to be the chaplain, on the verge of vomiting from the stench, and here Mary was welcoming me. In a moment the upset passed.. She had been a madam, and one of her clients was Diamond Jim Brady who had participated in building one of the transcontinental railroads. Then we sang "Little brown jug", and I took her hand and thanked her.

I returned to the nursing station bubbling. I told the charge nurse of my wonderful visit. She was outraged. "What do you mean you talked to Mary. Here, look at her chart ... Can't you she is ... and she read off a long list of clinical psychiatric diagnoses ... SHE CAN'T TALK. Don't ever do this again. You must always read the chart before you see a patient."

I determined at that moment, NEVER to read a patients chart - before I had a chance to have them tell me  their story, in their words - mano a mano. That was 35 years ago. Mary and our "Little Brown Jug" are just are as fresh in my mind, as if it had happened yesterday.

Have you made that discovery too... that A HA moment to choose to listen, really listen before geting caught up in the diagnostic stuff with your elderly parent or your patient?

Unsung Heroes - Unspeakable Grief

On the value of building a listening and holistic caring community

A week ago I met two older women who demonstrated the most amazing courage while managing the most gut-wrenching grief - both in the midst of a perfect storm of care giving. and the system didn't have a clue about of the depth of their anguish.

It all started quite innocently. I was waiting for a follow-up scan, with an older couple in a small waiting room. He shuffled off, with some difficulty, to his procedure. I asked how her husband was doing. "I'm not his wife", She said, "I'm just a friend. He keeps having strokes and seizures." "Wow", I said, "Do you have any idea whats' going on?"

And then the tsunami of feelings, the pain and the frustration ...."Despite my care, concern and personal requests, he refuses to stop drinking - even when I say it's killing him. Each time he goes on a binge, he calls me. Each time I'm there, to call the ambulance, or take him to the ER. And in  return, in between the nice times, he is becoming  more abusive, and more manipulative.  I just want to help him, but I don't know what to do. It's scary"

We talked about 30 minutes. There we were, surrounded by hundreds of care givers. But, because she was a woman of a certain age, and her family culture frowned on talking about personal stuff; she had just kept the lips zipped, all locked up ... period.

I reassured her about her needing to be safe, that it was OK to be clear and set healthy limits, perhaps check out AL-Anon. But what was important to her, she said, was that we talked, And that she had finally had a chance to get what was inside - outside.

Observation: I find the simplicity, the clarity of her care and her courage profound. She just wants to be supportive.  The tough part is breaking free of the co-dependency.

Minutes later, on my way out, the second lady was sitting on a curb between two lines of parked cars crying. I sat down on the curb. She said, tears streaming down her cheek, she wanted to cut off her leg - after five years and $35,000, she and her husband had nothing left, no more money, no medication touched her pain. She had just left yet another doctor with another,"I'm sorry there is nothing we can do", diagnosis . She was at her wits end.

I asked about her journey of getting treatment for her foot. Again the tsunami of pent up pain, frustration, fear. We talked and talked, we also explored options for a social services case conference, pulling folks together, finding a champion, getting some small group pain management support at the hospital. But what really mattered to her was that someone  stopped long enough to listen, take the time to hear the whole story, in that moment she was able to begin see a path out of the excruciating darkness. She was going from specialist to specialist for her foot. What about the rest of her body and mind? Who was listening?

That's hard find, folks.. The insurance company says it will fund 12.5 minutes on diagnosis... but not fund 20 minutes to uncover the real deal underlying clinical data, so the caregiver and the patient could become active participants together in a holistic plan of care.

In both cases, I just happened to walk by. But I remember vividly the months of  struggle against the darkness that I experienced with loss of mobility and leg pain, how difficult it was on some days - just to find the switch to shed light on objectivity; and ultimately, how important it was that caregivers took the time to listen to my story. It was transformative.

But I think, these two women are heroes with real courage. They deserve to be heard and supported  by a sensitive and responsive holistic caring network of resources in the community, not just the narrow clinical focus on strokes or seizures or ankle pain, but the whole context of each womans reality, the struggle and the courage.

Caring resources need to be funded to spend more time cooperating, collaborating, sharing and listening,  rather than buying into a gladiator culture of doing mortal combat over whose institution will prevail, and who will get the bigger share of the Medicare/Medicaid pie.

I think if we returned to listening more - we would save billions and see more positive outcomes. So does at least one insurance company that is finally paying their doctors to do just that. What do you think ... Can we do this better?