For the 6 months that I have not been able to drive because of medical reasons I have become a regular user of Uber. I find Uber more flexible and convenient than standard taxis. As regular users of Uber services know, many of the drivers are originally from elsewhere, by which I mean overseas and came as immigrants or refugees.
To anyone that knows me well, my interest in people and their stories plays a prominent role in my modus operendi. Also following many years of travelling overseas as part of my work as an academic geriatric medical specialist, I have learned that there are many interesting stories and points of view to be gleaned from taxi drivers. So it has come to pass with my multiple Uber trips. The point of initiation of engagement is if I recognize an accent and ask the driver from where he came. They often ask me to guess, but I have already had a hint by the Uber app which provides the name of the driver. If it is one of the typical names and the accent fits I may venture to say something like, "the Middle East or Former Soviet Union or Ireland". If I am close or correct I am usually complemented on my guess, with a question such as "do you know my country" which if positive opens the door to the conversation.
Because I have travelled a good deal during my medical school education in Scotland which at the time afforded me may months of free time to travel, sometimes combined with a medical elective experience in the country I was visiting, but also a chance to pick up some of the language, friendships with local residents and a travel experience—which often resulted in friendships some of which are still operative. I also witnessed historical moments like the coup in Greece during the 1960s, the build up to the Six-Day War in Israel and the vote that ousted the regime in Argentina that replaced the prime minister with Carlos Menem who shook the economy with economic reforms. I was in Argentina with my teenage son for a geriatric conference during the time of the election that brought Menem to power and we witnessed the hundreds of police officers patrolling the streets of Buenos Aries, with a favorite hangout of the blue uniformed police being the McDonalds in the Centre of the city on the Avenue de Mayo.
The driver answered, "Turkey-Istanbul, do you know it?" To which I replied with unbridled enthusiasm, "Yes I do, have been there and loved it." He turned towards me in the passenger seat and smiled. "It is a beautiful city". I followed with the question, "do you know the movie Kedi" He turned toward me with a huge grin, "it means cats" to which I acknowledged, "I love cats, we have three Abyssinians in the house and a number of feral cats in our backyard—three consisting of a mother and two of her litter that have adopted us or maybe allowed themselves to be adopted by my wife who diligently feeds and speaks to them. The bond is so close that we have purchased a number of cat shelters for them to increase their comfort which is helped by straw we bought from one of my wife's students who comes from a rural community outside of Toronto. Besides dry cat food many of her friends give her wet food that they have accumulated from their own cat adventures—we try to get them neutered and receive their vaccinations with the clipped ear being evidence that they were caught for this purpose before being released back to their feral home.
The driver and I talked about the wonderment of cats and how they are part of Istanbul life. To observe the seven cats and their litters featured in the movie was a real joy, with the film starting with a picture of kittens waiting for their mamma to return with breakfast—their tiny heads peering through the railing surrounding the birth site. The clips of the cat who ventures to the fish market every morning where the local fishmonger prepares the remnants of the carved fish for the dependable visitor as if it were a guest coming for dinner. Among the most moving scenes were that of people whose lives were either impacted or even saved by their feline companion who through the special sense that cats have of responding to human need.
One moving clip was of a fisherman whose adopted cat helped the small fishing boat captain deal with depression and loneliness, would roam the boat as it churned through the Bosphorus, acting like the queen of the sea as the captain beckons it for a pat. More devotion from an animal towards a human cannot be found—it is unfair to categorize the cat as a pet, it is more like a friend, companion and loved one.
We reached my destination, but not before sharing our common bond in the love of cats and their deserved place in the hearts of mankind—the Turks of Istanbul have done it, we should be able to emulate their devotion and bring the feline joy to our communities and individual families.
For those of us who are planners, it seems perfectly natural to anticipate the possibilities of the future and try to take steps to either avoid bad outcomes or implement steps to mitigate deleterious outcomes. My late father, an engineer whose expertise was motor vehicles, drummed into me the importance of timely oil changes—which I do to this day: it is an almost obsession with me. I constantly have to remind my children to keep up the schedule and over time they are getting better at it as I give them visual images of burned out engines, and the need for early retirement due to expensive maintenance costs of their cars.
For those like me who attend to elders as patients, with the usual accompaniment of their spouses and/or children, beyond clinical care, much of my time and effort focuses on planning for the future. Because my clearly defined domain is medicine, that is always the first level of interaction of clinical relationships. However within a short period of time depending on the length and duration of our relationship I try to focus on future planning—in all domains (what is often called advance care planning) and more recently on documentation of all the necessary information that makes it easier for families to cope with the challenging life events including severe illness or death.
During the past few years I have experienced on a personal level and extended family level the risks, benefits and barriers to planning for the unexpected and although foreseen theoretically always seems to be projected well into the future. One has often heard the phrase "Nothing focuses the mind like a hanging", attributed to the 18th century, poet, writer and critic, Samuel Johnson. Some people deal with the knowledge of a new and potentially debilitating or even eventually fatal illness with disbelief or the quest for an alternative diagnosis or as postulated by the Swiss Psychiatrist Elisabeth Kubler-Ross which in the original form included:
The stages, popularly known by the acronym DABDA, (from Wikipedia July 12, 2017):
- Denial—The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
- Anger—When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"; "Why would this happen?"
- Bargaining—The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise. For instance: "I'd give anything to have him back." Or: "If only he'd come back to life, I'd promise to be a better person!"
- Depression—"I'm so sad, why bother with anything?"; "I'm going to die soon, so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the individual despairs at the recognition of their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
- Acceptance—"It's going to be okay."; "I can't fight it; I may as well prepare for it."
In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.
What is missing from this time honored construct of the stages of dealing with serious illness or impending death is what plans one undertakes to make sure everything is in place no matter the outcome. Like an impending hanging—one should focus one's mind on the often ordinary and mundane plans to make sure that one's family is not left to struggle with the emotional challenge of loss and have it compounded by incomplete and scattered financial and estate plans without clear direction as to whom one should contact to do what?
Anyone who has been through this process either as the person diagnosed with a serious disease or has witnessed the occurrence in a close family member or friend is likely to recognize the common failures when it comes to proper preparation. One approach that I have found useful when explaining to my patients and their families the importance of such planning is to go through the major steps that are involved, using as plain language as possible. Having a check list guide is another way of making sure that the important issues are addressed and documented.
Although it may seem self-evident, the first step is often dealt with as a crises rather than a well-planned process:
Arranging for the funeral and burial:
I became a convert to the pre-arranged and pre-paid funeral many years ago after I arranged it for myself—as a way of avoiding my family having to deal with such an emotionally fraught process in the time of crises and mourning. I found through the process I went through that the funeral home was very organized, dealt with all the issues and at the end provided me with the necessary documentation and contact numbers so that when necessary one phone call and the account number would assure the process would take place as I had wished it, not under the duress of making decisions such as type and expense of the casket. As an aside, pre-paying results in a financial saving as the payment is in current dollars not an inflated price in the future. If the person in question travels a lot it is worth paying the slight premium for return of the body to one's home town from anywhere in the world which could potentially cost a great deal.
Contacting critical people:
Aside from contacting close family members the critical people I am referring to: One's lawyer; financial advisor(s); insurance agent; bank manager; wills executor and accountant. With the help of this team, most if not all if the issues related to death and the issue of interpretation of the will, procedures around the release and distribution of assets can be undertaken in the most time efficient and non-emotional fashion. One should discuss the important points with the spouse or children who would be survivors to make sure everyone who should be in the loop of decision-making is properly prepared and informed. Arrangements for immediate cash-flow should have been anticipated and arranged so that there is no problem with paying necessary expenses while awaiting the final distribution of assets.
Making necessary documents readily and clearly available:
This is one of the most important steps in the estate planning process, one of the most difficult and tedious and the one which if not done well can leave one's loved one's high and dry or at least spending lots of trying to find important documents. Of the necessary documents that must be found as soon as possible during the latter days of a loved one's illness and after the death of a loved one is:
- Powers of Attorney for personal care and for finance and any evidence of preferred wishes for the end of life period.
- After death:
a. Funeral arrangements: funeral home and burial site, will and name and address of Lawyer (who will usually have an original copy of last will). It is often worth considering taking on that lawyer in at least an advisory capacity to work through the nuances and facts of the will as the lawyer is likely to have had conversations with the deceased as to priority wishes prior to death. Sometimes there may be an estate document that explains some of the preferences and wishes to the executer to try and steer him/her in the right direction as the details of the will are implemented
b. Name of bank(s) and accounts in which loved one is primary (even if joint accounts)—and check books so that co-owner of account can readily access money during the period after death
c. Insurance agent to make sure insurance policies that will be in force will be acted upon with the insurance company
d. Accountant to make sure final tax return will be done properly and in a timely fashion
e. Investment advisor(s) to make sure necessary accounts can be dealt with and estate implementation can begin for the surviving family and estate planning if they do not have their own estate manager and account manager(s)
f. Trust arrangements if they exist
g. Charitable donation arrangements that might be ongoing after death and their parameters
Some of the processes may take a longer time than might have been anticipated so that it is important to make sure that what amount(s) of available money is documented and where it may be situated and what organizations or agencies have to be notified as to death so that regular payments can continue or be cancelled or changed in terms of payer.
Gathering all of the pertinent documents into one binder or file would the usual way of gathering and making available this information. Putting it into an Excel spread sheet would be another way and keeping that file readily available would be more contemporary way of doing it. Using one of the many commercial products available to facilitate a digital record might make the task easier and allow for easy editing and updating and if done properly make it hard to hack or disrupt the record that may be kept in a digital format.
One product among others I am impressed with is LifeBank™. There are a number of apps for IOS and Android and on line portals for keeping a record of medical reports, etc. There are what are called ehealth Wallets—a la Microsoft's HealthVault, Apple Health and Google Fit. There a variety of apps like myPHR, WebMD and Humana. Each suffers from a deficiency in one way or another. Clearly being on line via the cloud exposes all one's medical info to the "world" of hacking—now so widespread and pervasive. Many of the apps are also focused on fitness. Others, like the Humana, concentrate on a record of claims made.
LifeBank™—whose tag is Collect and Protect—can be used as a data key, totally off the cloud, or retained on one's computer or laptop. Either way, it contains a suite of forms providing a complete record from A to Z of all aspects of one's life. One significant and noteworthy feature of LifeBank is that one can scan into it—or via a cut and paste—all manner of documents including all of one's health-related records. Inter-activity with one's hospital or clinician is immediately enhanced! Leaving aside the value and security of being armed with all the information about oneself 24/7 in the event of an emergency, medical or otherwise, one's nearest and dearest—or an appointed trusted person like one's lawyer or accountant—can also be provided with a copy data key (for safe-keeping) or know where to access it should it become necessary. LifeBank is structured as a formatted document which reminds the user of the categories that need to be documented.
End of life planning is difficult enough although once undertaken most people can express their wishes and preferences to their loved ones and those who will be their substitute decision makers. Having the final medical preferences, documents such as the advance directives (living wills) and the estate planned information readily available will make the emotionally difficult task of implementing all the components of an estate plan will help make sure it goes as smoothly as possible.
When you enter a car showroom, a salesperson may identify you as a small-car buyer or a second-hand car buyer, or, if you're known to the dealership, perhaps as a solid every-three-year leaser. With a label in mind, the salesperson will approach you in a particular way. The same can be said of the barista who knows which customer is a "decaf latte" and who is a "dark roast with two creams"—or, in my case at my local Tim Hortons, a medium with two milks in a refill, often with a "good morning" that includes my name. (It's only at the drive-thru window does anything beyond my coffee preference enter the conversation, because I know some of the other servers and will ask them how they're doing in school.)
It's not uncommon to see the same dynamic in medicine—perhaps less so in emergency rooms or ambulatory clinics, but especially on medical wards where one begins what could become an ongoing relationship between physician and patient.
It's understandable that physicians and nurses are primarily concerned with the medical conditions they're responsible for treating. We develop languages that help us identify these conditions, and our shorthand often turns a person with an illness and personal worries and concerns into an organ system with deficiencies that require repair. It's easy to understand the dynamic that leads to the old-fashioned and much-criticized characterization of "the gallbladder in room 203."
So how does one get around the pressure to focus on the illness affecting a person rather than the person who happens to have an illness?
Part of the answer might lie in the long training of health-care providers, when a focus on the humanities should supersede, for a substantial period of time, the focus on what is in essence the scientific underpinning of medicine. Along those lines, I have read a definition of medicine that resonates with me. To paraphrase, it says medicine is a human, interactive and dedicated profession that's informed by science. In some ways, this contrasts with more standard understandings of medicine as the science of preventing, curing and treating diseases.
Whichever approach one takes, it's important to never forget Emily Dickinson's poem about surgeons: "Surgeons must be very careful, when they take the knife! Underneath their fine incisions, stirs the Culprit—Life! "
Another key reason why the patient's identity is so important is that it strongly affects how and why they may respond to medical interventions and the people providing their care.
As well, individual stories of lives lived make medicine a most wonderful profession. The multiple stories are part of the woven and sometimes miraculous fabric of this healing profession.
The dictum I use when teaching medical trainees dealing with a patient who is unknown to them, which I have found works wonders (other than in extreme situations when no time can be spent on anything other than immediate medical intervention), is to start an interview with, "So who are you?" rather than the usual "How are you?" This allows the often-surprised patient to tell the physician a bit about their life and values through their own personal narrative.
It can also cement the personal relationship between patient and doctor (and family, when they're part of the initial discussion). After adequate time is taken to develop a personal rapport, the business of "medical science" can take place on a platform of personal identity and valued personhood.
It's vital to good medical care.
This article was originally published online at http://www.cjnews.com/
I have often talked about how important stories are when it comes to medical care. We must, of course, use the best available medical knowledge to benefit our patients, but I believe it is also important to find the humanistic aspects of care and build on them, in order to foster human relationships.The importance of learning the patient’s personal story is key to achieving this goal.
Instead of asking a new patient, “How are you?” I recommend asking, “Who are you?”—meaning, “What is your story?” Recently, before meeting a new patient, I tried to see if his name would tell me anything about who he is. Having spent many years travelling, I can often relate to people if I get a clue as to their background or nationality—which, for people with European backgrounds, is reasonably easy for me at this point in my career.
I looked at his name and could not be sure of his origins, but I thought it might be close to Greek, or at least Mediterranean. To my surprise, his wife, who appeared initially to be more outspoken, said, “we are Egyptian.” With my knowledge of Egypt, I felt comfortable enough to ask, “Are you Coptic or Jewish? The name does not appear Muslim.” The patient seemed surprised that I actually knew about the various ethnic groups in Egypt. I told him that I had lived in Israel for a number of years, so knowing about Egypt was important for many reasons.
Their eyes lit up and he said, “We are Egyptian Jews.” After I inquired further, they said that they left the country just as Gamal Abdel Nasser came to power in the 1950s and began expelling most of the country’s remaining Jewish population.
“There are only few remaining Jews in Cairo, with members of one family being responsible for maintaining the main synagogue. We knew the family, the name of which is Haroun, and the elder sister died recently so the younger one is the primary caretaker of the synagogue, along with a half a dozen or so other Jewish women—there are no Jewish men left in Cairo,” he said.
When I mentioned that some of my friends and colleagues are Coptic, he said that they were very close to the Coptic community, both being minorities and beleaguered communities in a predominately Muslim country, but had managed well for centuries, prior to the explosion of pan-Arabic nationalism.
When I retold this fascinating story to one of my Coptic medical colleagues, she said she would mention the story to her parents, without naming my patient, but but would inquire about the Haroun family.
The next morning, I received a text saying that her mother knew the Haroun family and went to school with the remaining sister. As it turns out, Magda Haroun is still involved in keeping the local synagogue active (an interview with her, titled Closing the door: the last Jews of Cairo, can be found on YouTube).
When I mentioned the follow-up to the story to one of my Coptic friends, he mentioned that he too knew the family and told me that there are in fact eight remaining Jewish women in Cairo and that Magda Haroun is the community leader.
The story reminded me that there are often only a few degrees of separation between us, and that a little searching can bring out wonderful stories (elders are often the repository of such stories). We must find these stories whenever we can, as they are our collective human legacy.
This article was originally published online at http://www.cjnews.com/
Food is clearly one of the essentials of life. Most people in the more developed world consider food as much for its culinary delights and aesthetics than for its nourishment attributes. Eating and feeding is one of the first experiences among virtually all mammals and for humans the tie to feeding/nurturing process starts with the first suckle and ends with either last swallow—or when medical technology joins the complex end of life process—when the last drop of tube feed is administered. For many family members the differences between eating and drinking which is associated with the pleasure of the first maternal feed and a life-time of socially mediated eating, and artificial nutrition and hydration as only a matter of interpretation—for others there is no comparison. How this plays out in end of life situations varies for many reasons: physicians can help families make decisions about most feeding situations to help the family's interpretation of their loved one's preferences.
Key Words: End of life care, tube feeding, artificial nutrition and hydration.
The mothers of all living species appear to have a biologically determined need to feed their young. For those interested in the natural world, among its many wonders is the extent to which this applies and the care taken in feeding the young—often with careful maternal deliberation for fair distribution of food, and at times, the care taken with those in need of preferential feeding.
For humans it is a given, virtually from birth, that the desire to be fed as expressed by a newly born infant is matched by the desire to respond to that visceral connection by the mother—so much so that failure to respond usually is an indicator of some serious aberration or illness that interferes with what most would consider the "natural" order of such a relationship.
This same fixation on the importance of food in human relationships often plays out in the determination that spouses and children express when it comes to feeding a frail, failing elderly loved one—irrespective of whether the desire or ability to eat normally or at all has been undermined by a medical condition. In my own experience as a geriatric medical specialist with a special interest in late-stage dementia and, more recently, palliative care, such an inborn drive to feed one's loved one is sometimes taken to inordinate lengths.
Some scenarios appear to repeat themselves, even if the individual's circumstance appears to differ. A common example is a person with end-stage dementia where cognitive abilities are severely compromised. This condition is often associated with impairments in the desire to and/or ability to eat despite often very time-consuming and almost heroic efforts by family and professional caregivers.
Often the question of artificial tube feeding is raised, but depending on the situation, rejected by the family—often rightfully so—because discussions or advance directives (living wills) made by the person rejected such an intervention.
Many in the field would concur with such a decision, as the feeding would provide little if anything in the way of comfort, would not decrease the possibility of abnormal aspiration (inhalation) of food and would add virtually nothing to the quality of the last stages of life.
We have collectively learned that what is called "comfort feeding," by which even small, nutritionally modest amounts of favourite foods provided by a loved one may be the most humane way of demonstrating the devotion associated with feeding, fostering the sense that one's loved one is not being abandoned or even worse "starved to death."
In another common scenario, a patient in a hospice (palliative care unit) with progressive malignant disease often has no appetite and is losing weight as a consequence of the illness. Some families become obsessed with feeding their diminishing loved one, becoming desperate in their quest to find a way to increase eating, often bringing delicacies from home in the hope that something will tweak the appetite. In extreme situations, the family member is almost "force feeding" their loved one with the hope that the right food might improve or even reverse the inexorable course of the terminal stage of the illness.
Sometimes the only thing the dying patient may want is something as simple and flavourful as ice cream—I am a big believer in ice cream as suitable for end-of-life care. But you must choose the right preferred flavour, and not worry about whether it is nutritious or not. If it's enjoyed and savoured—and that is the measure by which to judge – it may be one's last act of kindness to a beloved family member who is in the process of dying.
This article was originally published online at http://www.cjnews.com.
Physicians usually become adept at choosing medications for the complaints and illnesses that patients bring to their attention. Doctors have to become familiar with the common medications that are indicated for the most prevalent illnesses they see, and there are many resources available to keep physicians as up to date as possible on the most effective drugs and what the medical evidence says about indications, side effects, drug interactions and priorities of care at various points in the progression of a patient’s illness. In the elderly, there are often a number of illnesses competing for possible medical attention and intervention.
Dementia is the umbrella term used commonly to describe the cognitive decline that affects many older individuals. It may be due to a number of recognized conditions of which Alzheimer’s is the most commonly recognized, but the effects of blood vessel (vascular) disease are also very common factors in the aging population.
There are some medications for these conditions that affect memory, judgment and behaviour, the symptoms of which may cause great strife in the individuals affected as well as their families. The symptoms often cause immense challenges when it comes to the use of possibly helpful medications. The pharmaceutical products available for improvement of memory and judgment are often helpful in some individuals, but even when they are effective, they do not “cure” the cognitive impairment. They may, however, provide some improvement in certain aspects of cognition and especially socialization and interactive abilities.
Most challenging are the medications available for what are called behavioural manifestations of dementia, so much so that decisions to transfer to protective living environments such as nursing homes may be the result of such behavioural processes. These events may occur periodically and in what appear to be unpredictable outbursts. Although there are medications that are often used under such circumstances, which may be effective in decreasing the intensity of the disturbing symptoms, they—as do all medications—have potentially bothersome side-effects that may limit their efficacy.
During the past few years, the medical and non-medical health-care professionals involved in such care decisions have discovered that a number of non-medication interventions may be very effective and helpful without the risk of medication side-effects. Probably the most well-acknowledged and studied has been the use of individualized music, which has been shown to quell some of the agitations and disruptive behaviour associated with dementia. There are programs through the Alzheimer societies that provide personalized music on small iPods that can be used during episodes of behavioural outbursts.
In addition, there has been an expanding experience of using a range of alternative treatments such as pet therapy and doll therapy. In the latter, agitation, primarily in women, can be calmed by providing a life-like infant doll that brings out the calming and nurturing reactions many older women experienced during their earlier maternal days. Massage therapy and aroma therapy have also been used with good results in certain individuals.
The importance of these alternative therapies is that, unlike medications, they usually do not have side effects that might limit their effectiveness. They often tap into aspects of the person’s residual abilities that bring out what might otherwise be hidden aspects of his or her personality. Of greatest benefit is that these therapies are often provided by concerned and loving family members or dedicated health-care professionals, thus enhancing the social aspects of care that have been identified as being important through the course of conditions responsible for cognitive impairment.
Just imagine listening to one’s favourite music with an affectionate cat on one’s lap, while someone who cares enough provides a hand massage, rather than a dose of a medication that may cause drowsiness, increase the risk of falls and impair the person’s ability to walk securely. It may not always work, but it is always worth a try. So it’s important to be persistent and see what might work.
This article was originally published online at http://www.cjnews.com/perspectives/opinions/beyond-medications-dementia