...its root (palliate) or any of its forms. The first time I heard it in a medical context, though, was when I learned of my mother's lung cancer diagnosis, chanted simultaneously with the diagnosing physician "no treat", and we were referred to Hospice. When Mom's Hospice liaison was assigned and she spoke the word, I was familiar with it, had a sense of what it meant: The word "subdue" skittered through my mind. I figured it had to do with addressing the possible pain and other bothersome symptoms that might occur as my mother's lung cancer progressed. After that point, though, the word was rarely used. I didn't develop more than a nodding familiarity with it until, late in my mother's life, I was introduced to The Dethmama Chronicles and, through those, Pallimed. By that time the word barely mattered, since my mother was progressing through an already good life and was so well spotted, by me and her Hospice care team, that she could not have avoided a "good" death (according to her definition, of course, which included her certainty that she would not be dying).
Since Mom's death I've become even more attuned to the palliative care movement in medicine. I'm fascinated by it, as, frankly, when I think deeply about it, it seems as though, whether a patient has opted out of curative treatment for any particular ailment or has decided to pursue treatment, palliative care has a place in almost any kind of illness or treatment that could cause uncomfortable symptoms.
Finally, about a month ago, after reading one of the posts incorporated in the latest edition of PCGR entitled Cancer, NPR and thoughts on health-care in the U.S., posted at Words from a Witness, I was moved to look up the meaning of "palliative" and its root, "palliate", in two dictionaries, on a hunch. The first is my ragged, 40 year old standby, Webster's New World College Edition Dictionary of the American Language © 1968:
The post, written by Kirsten, who authors Words of a Witness, was prompted by an NPR interview in which Terry Gross of Fresh Air spoke with Dr. Robert Martensen about his book A Life Worth Living. Kirsten focused on the appropriateness of a palliative approach, particularly in regard to her mother, who is experiencing terminal breast cancer, and the difficulty of not only encouraging her mother's medical providers to assert the palliative over the curative, but encouraging her mother to adopt this approach, as well.
As I read the post, though, I couldn't help but focus on a completely different issue. Let me quote myself from the comment I left: "Not until I read your post...did it occur to me that, through my assertive medical advocation on [my mother's] behalf, she actually received palliative care in ever increasing levels through the last five years of her life...Realizing this is an “Aha!” moment for me. I had no idea I was doing this...my only regret is that her (many) physicians were more often than not our opponents as I sought this type of care for her rather than our friends. What a relief it would have been (for me...because of my efforts my mother always lived in an atmosphere of relief) if all of us had been working in concert!...I think she lived longer and I know her quality of life right up to her final breath was superior because of my “palliative” intervention. I just wish I hadn’t had to do it alone."
Until my mother was diagnosed with lung cancer and the immediate decision was made not to treat, it was an uphill battle for me, from 2002 up to the cancer diagnosis, to rigorously assert my mother's wishes not to be "poked and prodded" by medicine and to allow her to lead the rest of her life without extraordinary curative medical intervention. In the beginning, some poking and prodding seemed diligent: Attempts, for instance to determine the cause of her iron-deficiency anemia (all of which were unsuccessful), including a colonoscopy, which was pronounced a "torture" of a mistake by the internist who enthusiastically recommended and performed the procedure; interventions, all of them alternative medical treatments (non-alternative medicine refused to intervene because she was in Prescott and her PCP was in Mesa), designed to help her heal from a back injury due to a fall; a transfusion, followed by serious iron supplementation, when she had an anemic crisis; a hospital and short rehab stay after a stroke-mimicking low sodium incident; yet another transfusion in the fall of 2007 and an upping of her iron supplementation; weekly epo shots for about four weeks in an attempt to control her anemia (which worked, right up to her death); a short hospital stay for a debilitating and difficult to diagnose episode of pneumonia (which led to her diagnosis of lung cancer), followed by yet another rehab stay to help her regain enough leg strength to help me help her. My mother was not happy about any of these interventions, except the acupuncture for her back and the iron supplementation. It was typical for her to refuse any suggestion of tests or treatments. Sometimes I overrode her. Most of the time, though, in concert with her wishes and on her behalf, I battled test suggestion after test suggestion, including further scopings, bone marrow biopsies; some (although not all) blood tests (the frequency of which was really irritating my mother); medications with dangerous side effects in favor of those that did the trick more gently, or, sometimes, no medications at all. As I worked on her behalf to keep her life on exactly the even keel she wanted, I was responsible for her expulsion as a patient by two physicians. Luckily, her long term PCP always accepted her back and, from 2001 on, he and I slowly but surely came to an understanding that allowed me to opt for fewer and fewer diagnostic measures in favor of more and more palliative measures. In the final years of her life this physician, twice, took me aside and thanked me for taking such good care of my mother. Despite our disputes, he was, finally, not only convinced but appreciative of my insistence on a light-touch application of medicine to my mother.
After I'd read and commented on Kristen's post, though, I listened to the entire interview. As I listened I became aware of what seems, now, to me like the more important facet of my in-home palliative care practice: That I was "here" and "there" for her, as her companion and intimate, all the time, not only protecting her from overly aggressive medical intervention, but assuring her, by my presence and my interest in her life, that, no matter what, we were a team, we knew each other through and through, we honored each other, including our idiosyncrasies and, no matter what we encountered, we'd get through it and come out on the other end smiling, joking and enjoying life. Not only, my "cloak" of care assured her, did I know I was important to her life, I knew she was important to mine and I was rigorous in letting her know this.
The amalgamation of information that allowed me to realize this appeared throughout the interview. During part of the interview Dr. Martensen talked about his mother, 91, just as was mine when she died, who was declining, in assisted living, on Hospice, with no discernible quality of life, devastated by her own dementia, practically begging to be allowed to die. Her condition couldn't have contrasted more sharply with my mother's. Dr. Martensen attributed his mother's misery to her extreme discomfort with her dementia and her years' long assertion that she could not enjoy her life if her mind demented. This was surely playing itself out.
Later in the interview Terry Gross speculated that, while everyone (well, almost everyone; my father wished he could develop dementia; he never did) of sound mind fears the onset of dementia and assumes it will seriously and devastatingly impair their quality of life, it's not unheard that some who develop dementia do not inevitably live the life of one condemned. Dr. Martensen agreed by telling of another 91 year old woman, also in assisted living, also somewhat more deeply ensconced in dementia than my mother, who continued her optimistic, wise-cracking ways, had procured a boyfriend down the hall, was visited daily by her daughter and was experiencing a very good quality of life.
I remembered that before my mother began to dement, because of her experience with her mother's and sister's dementia, she, too, feared the possibility of dementia. Her eccentric character never allowed her to obsess over it, but, as she, for instance, over drew her checking account and I took over her bookkeeping, began to space appointments, had lapses of memory about this or that person and their lives, to which my response was to simply remind her, as often as necessary, she'd occasionally voice concern that she was "becoming like" her mother or her sister. Each time she mentioned this I'd face her fear directly, meticulously explain to her why her dementia seemed to be developing differently than theirs and assert that we could not assume what life held in store for her, especially since, even though both her mother's and sister's dementias were profound, they did not mimic one another. I'd polish the lecture by saying, "Anyway, Mom, it doesn't matter. I'm here. If you need me to take up slack, I will. If you need me to remind you, I will. One way or another, we'll get through everything together." Eventually, as I picked up more slack, as I managed more facets of her life, as I adjusted to every misstep of her memory so that, finally, neither she nor I fell out of step with one another, she relaxed. For the last six years of her life she stopped worrying about her dementia. It was handled. Well.
As I have, often, in these journals, I couldn't help but wonder, surreptitiously (because, you know, every family's situation is different when it comes to caring for their elderly and I am painfully aware that Mom's and my situation is impossible for most families to even remotely duplicate), as I listened to the interview, what distinguished Dr. Martensen's mother from the wise-cracking woman and, for that matter, from my mother. Why was Dr. Martensen's mother spiritually devastated by her dementia? Why wasn't my mother? Why wasn't the wise-cracking woman?
We don't have enough experience with dementia, the declining health of the elderly and living circumstances to infer any answers with any reliability. Some of it could be due to overall character traits and life long habits of living, as suggested by The Nun Study and another study mentioned recently in the New York Times. Some of it could have to do with the cause of the dementia. Some of it may have to do with the effect of comorbidities on the mental and emotional health of the Demented One. There's one possibility, though, that we're avoiding like the plague: Maybe part of the difference in how people adjust to their own dementia and physical decline is directly related to how their relatives and acquaintances adjust to it: Whether those in their closest social arenas bother to adjust to it, or flee from it for any of a variety of reasons, most of these reasons caught up in the attitude that, as a people dement and decline they become strange, no longer worthy of whatever attention they may need to remain in our quotidian lives. Several comments culled from the residents at the Laguna Woods retirement community mentioned in the NYT article linked above, where lively, floating games of contract bridge are often the ultimate judge of whether someone deserves to be helped to remain in the game of life, put it succinctly:
“When a partner starts to slip, you can’t trust them,” said Julie Davis, 89, a regular player living in Laguna Woods. “That’s what it comes down to. It’s terrible to say it that way, and worse to watch it happen. But other players get very annoyed. You can’t help yourself.”These statements, although they are uttered by the oldest among us already in secure retirement facilities, are excellent representations of thoughts we all, in this society, have, statements we all make, actions we all take, when confronted with declining, dementing relatives. The rhythm of our lives in this society, so far, cannot, except under extraordinary circumstances and with effort that is, realistically, impossible for most people to manage, accommodate the rhythm of those of us who decline and dement.
So, we leave out of the equation the possibility that accommodation by those who know the elder well may make a difference in the quality of the elder's life. We don't talk about it because we can't. Knowing that our lives are not set up to allow for the type of accommodation that is necessary, it's too painful to consider. If it turns out that the quality of care extended by others to the declining and demented, especially others to whom the affected have cemented life long connections, makes an apt difference not only in the trajectory of dementia and physical decline but in the quality of life and the desire to remain alive, well, damn, WHAT CAN WE DO? Our lives are, we believe, out of our hands, thus, our demented elderly must slip through our fingers. In any case, since few of us can manage the tasks of close companionship and care, the chances are excellent that we won't soon discover whether such care offers any benefits to the care recipient. We will only be able to extrapolate from the effects of rudimentary companionship and care and those extrapolations will likely be unconvincing. Thus, those of us not in decline, those of us not experiencing dementia, will continue to have little reason to reconsider our roles in the lives of our declining, dementing loved ones.
How does all this relate to in-home, family extended palliative care? I'm not sure. I wonder, though, how much of a palliative effect my willingness to live my mother's life with her had on not just her felicitous experience of her own dementia, but on her quality of life, on her insistence on remaining alive, because, you know, she liked being alive, even in her last hours and minutes, even when it didn't feel very good.
I know. I know. Dementia displays in myriad ways. Someone, like a certain caregiver in HBOs The Alzheimer's Project: The Memory Loss Tapes, can go the excellent distance in home care and, still, her mother develops profound dementia, although her quality of life appears to be excellent. Yet another caregiver in the series takes care of her husband through the enhancement of a skilled nursing facility and, still, her husband, also profoundly demented, mentions how lucky he, and "we" are. Quality of Life? Probably excellent. Yet another local family with whom I'm familiar goes the distance with home care and remains convinced that their mother's quality of life was "poor for a very long time"...and, in addition, the husband reveals, the stress of caring for the mother was so treacherous that his wife "dropped dead" from stress related illnesses a few months after the mother died.
I can't help but raise the issue, again, though, and again, based on my own experience. I am certain, had I, early in the game, thrown up my hands, declared caring for my mother impossible, decided it was not worth the dedication it would call forth from my life and activated her long term care benefits, her dementia would have become profound; she would have, at some point, felt trapped in and resigned to a life of poor quality; she would have lost her desire to awaken yet another day; she would not have lived nearly as long as she did; she would not have, less than 24 hours before she died, insisted on "getting up", even though she was weak, shaky, confined to the wheelchair and needing to be securely propped, watched The Santa Clause, one of her favorite Christmas movies, with obvious pleasure, chatting amiably with me, as always, about the "realistic" North Pole scenes; savored a croissant and glasses of OJ and ginger tea.
Palliative care isn't only a medical offering. It's the cloak family and other loving members of our communities extend to our Ancient, our Demented, our Infirm. It's the protection and alleviation inherent in not only medical advocation and morphine but managing the lives and, ultimately, becoming the close companion of those who need our care in order to continue a quality existence. These days we receive this first and most important palliative care from our families and friends only if we are lucky. Maybe, in order to leave palliative care less to luck and more to expectation, as we expand the influence of palliative care in medicine we need to raise an awareness within society that, well, true palliative care begins, that's right, at home.