Home » Posts tagged 'Alzeiheimer’s Disorder'
Tag Archives: Alzeiheimer’s Disorder
When I say, reading Arthur Kleinman’s books changes one’s listening, I do not mean changes one’s listening the way reading Lacan or being hit on the head with a rolled up newspaper changes one’s listening. What I mean is, reading Kleinman expands one’s humanity, empathy, and capacity for engaged caring.
This is likewise the case with The Soul of Care: The Moral Education of a Husband and a Doctor (due out September 17, 2019 from Viking), the most important memoire by a psychiatrist since Carl Gustav Jung’s Memories, Dreams and Reflections (1962) [though with a different source and trajectory], an unsolicited prepublication copy of which showed up in my snail mail. It is a real page-turner.
Arthur Kleinman, MD, trained as a psychiatrist, is an innovator in medical anthropology, a discipline of which he is the virtual founder. He and his late wife Joan, also an academic, spent considerable time and effort doing cross cultural (anthropological) research in China on traditional medicine, modern medicine, and the connecting points (and divergences) thereof. Of particular interest were survivor of Mao’s Cultural Revolution, who suffered from the symptoms of “neurasthenia,” a disorder whose explicit diagnosis has declined in the west – including fatigue, dizziness, anxiety, demoralization, and hard to diagnose pain(s).
In the course of their time in China, Kleinman (Arthur) gets a combination of exhaustion and dysentery, which reaches life disabling and even life threatening, stages. Joan is the very soul of caring – nursing him back to health.
This provides one of the paradigms for Arthur when Joan eventually gets early onset Alzheimer’s and he decides to take care of her at home.
The Soul of Care is the memoir of Kleinman’s life’s work (to date) and what happens when he decides to practice what he preaches and takes on the task of carrying for his increasingly ill wife, Joan.
Kleinman does not use the word “empathy” much, but it lives in his work, and in this case, the man is living in an empathy desert and that includes the health care system that is relating to him as pain instead of a whole person. Kleinman’s listening, which creates a context for human relatedness, succeeds in moving the dial back a few notches, though no way exists of undoing the now fused spine.
I have frequently had my mind blown by the power and precision of Kleinman’s writings. For example (and now we are in The Soul of Care), another patient has intractable pain relating to her diabetes, yet the diabetes is under control. The numbers from the blood work and related tests show that the diabetes should not be producing such results. Something is not adding up. Is the patient faking? Is there some disorder that has been overlooked?
This fellow, Kleinman, sits down and has a conversation with someone with intractable pain. He is genuinely curious about the patient. He is interested. He nails it. He brings along a medical student on a home healthcare visit. The above-cited patient is a diabetic, and is eligible for Meals on Wheels, transportation to the hospital, alternative housing (p. 206). The medical team (notice: there is a team!) had no idea, because no one asked.
Time-after-time, Kleinman shows up and asks a few questions – it all comes tumbling out – in many cases out-and-out trauma; in other cases, subclinical post traumatic stress disorder; in most cases, life circumstances, stress, inaccurate or incomplete diagnoses being transformed into bodily symptoms.
Continuing the above example, the patient is a single working mother; poor; working the grave yard shift while simultaneously cooking, cleaning, getting her kid (who is doing quite well, thanks) to school, and managing everything else well enough – everything except her pain. The patient is not faking – the pain is authentic, but diabetic neuropathy is not the cause. The cause is a work life imbalance of virtually unimaginable proportions (once again, “work-life balance” is my summary description, not Kleinman’s). The patient is running flat out, and is eligible for food stamps and other support available within the system. But no one on the team even bothered to have the conversation, even bothered to ask.
What is happening is that a medical issue does indeed exist. But the human being is more than an insulin pump. If medicine wants to be a caring profession not a bureaucratic profit center, then the doctor may useful make inquiry as to what the patient thinks is going wrong (and right) in her life. What is happening is that the emotions, affects, cognition, personal spirit, are elaborating what is in effect the anatomical or organic lesion and defect.
One can appreciate that individual practitioners may well feel they are like the “Lone Ranger,” single-handedly arrayed against human suffering. One will do what one can, writing the prescription at the end of the session for something, anything, to at least get the placebo affect as a positive expectation itself sets off a cascade of neurotransmitters. Kleinman appreciates how devilishly tricky it is both to address the biological system and the suffering human being present in the space
Yet Kleinman is uncompromising – and with good reason. Time-after-time, simple inquiries as to what are the facts of the person’s life circumstances point powerfully in the direction of human interventions that shift the person out of suffering and stuckness and into action. Putting the pain in context enables the person(s) to improve their own health through life style adjustments.
After all, is this not the age of the informed, engaged, proactive health care consumer? Many medical doctors pay lip service to such engagement, yet are not prepared to answer questions or, just as importantly, help the patient formulate the half-formed questions they are struggling to express. Do the job, do it completely, and do it the way it was meant to be done on behalf of the patient and suffering humanity.
Pain is one of those things that sometimes one can’t live with, but one certainly can’t live without. The reflex that causes one’s hand to jerk off of a hot casserole dish is not yet pain. The reflex precedes the experience of pain by a couple of seconds.
The reflex does not go through the brain; the experience of pain does. To become pain, the sensory information in the nerves has to go through the brain. In short, pain is important to tell the person about damage to his or her body that requires attention. Pain powerfully focuses one’s attention on getting actionable results in addressing the problem. But pain can cause a member or organ to become hyper-cathected – a tight loop that creates pain in anticipating pain to avoid pain. By focusing on the pain, attention can expand pain, grow pain, and become a habitual pattern of pain stimulation to the organism. Focus one’s attention elsewhere? Easier said than done, though alternative interventions such as meditation, hypnosis, and self-soothing stress reduction activities (which Kleinman does not much discuss) aim to do just that.
Kleinman is himself something of a survivor: a son who never met his biological father, a grade school student who bore two utterly separate family names once his mother remarried, from two opposed sub-ethnic factions, one in public school, the other in religious school; a scion of a mysterious past about which his Victorian family was silent or whispered inarticulately, so that he had the extra developmental task of figuring out by himself, yet not announcing to others, lest they be hurt what identified me, which therefore could not be authorized (or denied). (See Writing at the Margin (p. 2).
I learned a lot about empathy from Kleinman, though he rarely uses the word. Nor would I consider Kleinman an advocate of empathy understood in the narrow sense of a psychological mechanism. Rather in a medical world (Kleinman is a psychiatric), in which diagnostic categories are mapped to psychopharm interventions, Kleinman is an articulate advocate for sitting down and talking to the individual about what is going on in the person’s life. What is working and what is not working? While it takes extra time upfront, such a conversation for possibility makes a profound difference in actually getting an accurate diagnosis as opposed to a good enough, makeshift band-aide.
Kleinman several times quotes the celebrated founder of sociology Max Weber in his studies on bureaucracy. As institutions become larger and more complex, rules and roles independent of individual charisma and personal genius are needed to scale up to deliver services to more people. Nothing wrong with that as such – serving more people with high quality medical care is everyone’s aspiration. Yet when I have a disorder whose cause or course are unclear, like most people, I want the brilliant diagnostician, the TV doctor from central casting whether Ben Casey or House or whoever is trending, not a functionary.
For those interested in additional diagnostic pyrotechnics or just plain background, The Illness Narratives, the essentials of which are recapitulated in The Soul of Care, is the place to look for expanded and amazing narratives. It too is a real page turner.
Kleinman’s The Illness Narratives: Suffering, Healing, and the Human Condition (Basic Books 1989) distinguishes incisively between the person’s experience of illness and the doctor’s concept of the disease as part of a biological system. To be sure, substantial overlap often exists between these two, but not always. What then opens up and becomes possible is an entire method and approach to healing that puts biological reduction in its proper place.
For example: When chest pain can be reduced to a treatable acute lobar pneumonia, the biological reduction[ism] is a success. When chest pain is reduced to chronic coronary artery disease for which calcium blockers and nitroglycerine are prescribed, while the patient’s fear, the family’s frustration, the job conflict, the sexual impotence, and the financial crisis go undiagnosed and unaddressed, it is much less of a success (The Illness Narratives, p. 6).
The Illness Narratives expanded my appreciation of how a physical injury can take on a life of its own. The injury is real enough and it becomes a grain of sand around which a misshaped black pearl is elaborated (my metaphor, not Kleinman’s). The physical issue is elaborated by the emotions, as unresolved personal issues in a person’s life seem to be magnetically drawn towards making meaning out of pain and suffering.
Another example, in The Illness Narrativesa self made assistant police captain, performing good work, helping a neighbor, throws out his back. The pain gets habituated. He just can’t shake it off – month after month. It is affecting his job performance. He needs even more down time, sick time. He starts to feel that people do not believe him – he is really suffering.
To demonstrate to others and to himself how serious the matter is – and in the hope of finding relief for his pain – he agrees to surgery. However, if one is in pain, surgery can be a deal with the devil (so be sure to read the fine print), because, at least in the short term, surgery is a cause of acute pain.
Several years – and surgeries – later, the person – now a picture of pain – walks into Dr Kleinman’s office. The patient is the walking embodiment of pain. His every more seems painful. A conversation reveals a life narrative not for the faint of heart. He was not quite abandoned as a child, but basically he had to raise himself. He would have starved as a kid of tender age if he had not learned how to scramble some eggs; his head barely reaching high enough to assess the progress of the food in the frying pain.
Culminating in his latest contribution, The Soul of Care, Kleinman’s career has spanned the Corporation Transformation of American Medicineas identified by Paul Starr (1984) during which the medical doctor has gone from being a sovereign authority, whose word was virtually the law, to being a functionary in a corporation optimized for capitation and revenue generation, all the while paying marketing firms to communicate how caring everyone really is.
In order to preserve the integrity of his commitment amidst the corporate transformation of American medicine, Kleinman innovates, inventing his own field of study, medical anthropology. It has legs. It works. A journal is founder. High quality articles are published. Institutions, funders, and financial support are forthcoming. He teaches it at Mass General – we pause to honor the storied name – and at Harvard – another pause. With all this pausing, we are never going to get through this review. Yet the broader lessons for healthcare as a whole of medical anthropology do not break out of its own resonant, transformational niche.
Kleinman is definitely not living in a cave. He spends seven continuous years doing cross cultural research in China with his wife Joan, who becomes fluent in Chinese and provides important auxiliary functions in team building, networking, and having a life. (I shall follow the convention of calling “Arthur” by “Kleinman” and “Joan Kleinman” by “Joan” for simplicity.)
Therefore when Kleinman’s own world is brought low as the love of his life and his professional partner, his wife of thirty years, Joan, is stricken with early onset Alzheimer’s, he find himself wrestling not only with the disease but with the medical bureaucracy and the fact that his innovations in medical education have definitely notbeen widely adopted.
First he learns how to perform household chores. He learns how to pay the bills. He takes over bathing Joan and preparing meals. He marshals support from his gown up children, who have kids of tender age of their own and are running flat out – all the while continuing teaching and research (albeit with a certain amount of flex time provided by his long-term employers – pause again to honor them – for whom Kleinman is a celebrity academic).
He gets a home helper, who is indeed an essential part of the support system. With 20-20 hindsight, he second guesses his own agreement, requested by Joan, that she be allowed to decline (and die) at home. He has an important late insight, realizing that Joan is no longer the person who entered into that agreement, the dementia having robbed her of [essential aspects of] her identity. Nor is he the same person, who he was after the ongoing ten year long struggle. Between Joan’s agitation, loss of identity, intermittent fear or psychosis, and incontinence (wandering was less of an issue, because the patient became blind), all bets – and prior agreements – are problematic.
The couple consult many specialists. The neurological resident Kleinman and his wife visit is interested in talking with them again – in six months – and in following the irreversible course of the disease, not in engaging with the human impact and cost for the wife and husband.
Confidentiality is important; but it becomes yet another obstacle as the well-intentioned neurology resident insists on addressing Joan, even though her expressed wishes are that Arthur be included in all the decisions. Queue up the living will and health care power of attorney. All well and good. But the problem is that the patient does not want to have a legal conversation, she wants to have one about caring. Noticeably absent is guidance as to caring. Key term: caring.
Kleinman matriculates in the college of hard knocks. As caring – and empathic – has he already is, it is all used up by the progressive dementia. He gets a home helper since, though relatively well off, he must keep working to pay the mounting bills – and for his own sanity. Towards the end of the middle stage of the disease, he actually takes her with him to Shanghai, China, in order to fulfill academic obligations and complete a stalled project in cross cultural health care.
The reader cannot help but wonder, “What is this guy thinking?” as he takes Joan, by then an easily agitated person developing Capgras (“imposter”) syndrome, through airport security to Shanghai. Somehow he pulls it off. The quality of care in China and the support for the family is truly inspiring, especially given how eager his Chinese colleagues are to be supportive with both traditional and modern medicine (and given that no one really has the answer regarding Alzheimer’s).
Without using the word “empathy,” Kleinman was already operating at an advanced level in relating to others in a caring way. He is the Other whose listening brought relatedness to suffering individual in one case after another. Now he faces new, life-defining challenge.
A recurring theme becomes how his ten years of care giving becomes a descent to the hell of irreversible dementia without the prospect of rebirth. As near as I can figure, his is a journey of the hero, with ample commitment and tragic struggle, but without heroism.
Even given his training as a psychiatrist and anthropologist, a well-connected professorial network with high quality, [relatively] responsive support, he is brought low, isolated, at the brink of emotional despair. But how could it be otherwise? He is losing his wife to a disease that robs a person of her identity (i.e., dignity), but she is still physically present and intermittently coherent. Even so he struggles to get straight answers from the medical professionals about the course of the disease, about the trade-offs between home care and assisted living.
The back story is that at some point early on in their relationship Joan decided that her life project was to take care of him (Arthur), the family, the kids, even supporting his research – they published academic papers together – while also mastering the Chinese language and immersing herself in that culture. She got good at it – very good indeed.
Kleinman decides that he wants to return the favor. Of course, it is not as simple as that. Kleinman talks about his own guilt and what he had to survive coming up. The point is that this man Arthur Kleinman is already the soul of caring; but he takes his caring to a new level through the refiner’s fire of caring for Joan.
It is a heart-warming and inspiring narrative – the ultimate illness narrative (also the title of Kleinman’s most impactful work prior to this one) – but also a harrowing one. Not for the faint of heart. Apparently at some point, [many] advanced Alzheimer’s patients stop eating. A morphine drip and lip moistening are the palliative measures recommended.
If you need a good cry, you will get one by the time Kleinman realizes there is no way to take care of Joan at home even with a full time assistant. The end is not
quick, but given the morphine drip, neither is it painful. What it is is impossible to put into word. The image of suffering of Shakespeare’s Lear, blind and wandering in a storm of agitated emotions towards the edge of the cliff, looms large. It’s her; it’s him; it’s both, though he ends up being a survivor. What is painful is the loss – the loss of humanity of the Alzheimer’s patient.
When Kleinman uses the word “moral” – it occurs in the subtitle of The Soul of Care as well as in the subtitle of his What Really Matters(Oxford 2007) – of course, he is referring to value judgments, candidate categorical imperatives, and assessment of ethically right and wrong behavior and character. At times, I doubt that the word “moral” adds to the discussion, since it is mainly about preserving one’s sanity in the face of the disintegration of the skills needed for the activities of daily living.
“Humanity” and “morality” overlap extensively and I doubt it makes sense to ask which came first. Yet they are not identical. There is a conflictual aspect to our humanity that morality attempts in vain to capture and make right by judging. Lear, blind and stumbling towards the edge of the precipice, is also wandering at the edge of morality, though arguably he never stops being a struggling human being. Neither does Kleinman.
Nor at any time does Kleinman become a moral relativist, though he is keenly in touch with the fuzzy, grey areas. The problem is that the space of human action and engagement becomes so thick with judgments and evaluations that one can hardly think, much less take action in the face of urgent emergencies.
Most of the tough (and narratively engaging) cases involve fraught decisions where fundamentally good people actually perform bad actions. In some cases the consequences of the action escape from the agent – as when the soldier follows the sergeant’s orders and blows up the car supposedly containing the suicide bomber, but it is actually a family of five on the way to deliver a baby. That is moral trauma. But in other cases individuals actually, intentionally commit war crimes (e.g., Winthrop Cohen in Kleinman’s What Really Matters) and spend the remainder of their lives twisted in knots over what happened, what does it mean, and how to go on.
Taking matters up a level, one such looming moral trauma is the ongoing corporate transformation of American medicine.
Kleinman channels some of his well-founded anger into targeting the systematic breakdowns of the American Healthcare system in the face of revenue incentives, corporate metrics, and devaluing caring. His jeremiad – I mean, argument – may usefully be made required reading – not only for doctors but especially for administrations and managers – in medical schools and systems. It is often the administrators who are taking advantage of the medical professional’s empathy in demanding more patients per period with no compromise of quality or attention to the demands of addressing human suffering in its physical as well as emotional and spiritual aspects.
Kleinman throws down the gauntlet, demonstrating just how far main stream, neoliberal, bio-political health care has diverged from his humanistic vision: “The problem, as some suggest, is not that we fail to quantify these experiences [of caring], but that they cannot be quantified, because they are essential human interaction, the soul of what health care is” (p. 238).
Many long term advantages exist in reducing spending upfront by life style changes in nutrition, exercise, stress management – and avoiding expensive medical technologies and interventions once the damage is done. A compelling quantitative case can be made that an ounce of prevention is worth a pound of cure.
Nevertheless the fact remains: quality health care is expensive. Though I am just a citizen, the Siemens Magnetic Resonance Imagining (MRI) device that took a picture of the torn cartilage in my knee looks to be almost as large and as complex, though in totally different ways, as the lunar excursion module (LEM) that landed two men on the moon in 1969. It turns out to be Rocket Science, so why should it be less expensive? Imaging, genomics, proteomics, personal medicine, personalized treatment using the most advanced technologies are quite simply expensive.
What is a lot less expensive – though by no means totally without cost – is sitting down and having a conversation for possibility with another human being – about her pain, disorder, and her life. And this conversation is one of the sources of quality healthcare and human flourishing, or at least pain management. This provides a powerful picture, too.
Read an excerpt from the book, quoted in Time Magazine: https://time.com/5680723/doctor-wifes-alzheimers/
A rumor of empathy is no rumor in The Soul of Care and Kleinman’s works. Empathy LIVES in Kleinman’s contribution. Kleinman does not emphasize this point about the power of ordinary language, though it is near enough to the surface of his text, but rather calls out the moral imperative: we must think deeply and with integrity about the kind of society and community we want to be. The extreme wealth being generated by innovations in technology make possible maximizing acts of humanity that advance community well-being. Whether that happens to the USA, as a healthcare nation is an existential choice of the highest order on the part of the individual and the community.
Lou Agosta, PhD and the Chicago Empathy Project