More Thoughts on Ageing...

Thomas Graboys, a well-known American physician became ill, a short time after losing his first wife to cancer. He was diagnosed first with Parkinson’s disease and then with Lewy-body dementia.

From his own perspective, Graboys and his friend, Peter Zheutlin co-wrote a book discussing the devastating effects of such incremental dependency, and loss of personal dignity.

In a recent New England Journal of Medicine (Nov 27. 2008) book review of this book Dr Joanne Lynn describes how "Graboys worried about the effects of his illness on his family, finances, and reputation, but he had enough family, relationships, and resources to support care at home."

She went on to say that "most Americans with similar dependency face impoverishment and institutionalization, chaotic and impersonal services, and routine errors in treatment. Policymakers complain about Medicare’s costs and Social Security’s shortfalls, but they rarely recognize the inadequate supply of at-home caregivers and the inevitable reduction in retirement income, both of which are personal calamities. We do not have a plan that could mitigate these problems,..."

"Graboys and his coauthor present the hard truths of these situations, such as the distress of family members who are caregivers, the potential persistence of a fragile life beyond all predictions, the problem of finding meaning in life when one has serious dementia, the overwhelming financial burdens, and the frustrations of losing one’s social role and memory. Graboys also mentions, but does not quite believe in, the possibility that family life could actually deepen its meaningfulness when members care for one another during progressive disability that eventually ends in death."

"Our society needs the perspectives that are provided by the stories in books like this, since our ability to evaluate the choices that patients and families make may be limited by our lack of experience. The narrative Graboys and his family encountered a profoundly problematic set of challenges as he lost his body movement, his medical practice, and then his memory. Exploration of his account and of other narratives of disabling and fatal illness helps our society to learn which actions in such circumstances are appropriate, which are heroic, and which are immoral."

Also a special thanks to my brother Henry, who furnished the following ideas through his search for how to sensitise ourselves to these problems of ageing and how we can all learn to cope with it and increase our understanding and perhaps ease the discomfort level of our loved ones who may suffer from these.

The following excerpts are from the familydoctor.org

"Dementia: Info and Advice for Caregivers

What is dementia?
Dementia is a brain disorder that makes it hard for people to remember, learn and communicate. These changes eventually make it hard for people who have dementia to care for themselves. Dementia may also cause changes in mood and personality. Early on, lapses in memory and clear thinking may bother the person with dementia. Later, disruptive behavior and other problems can create a burden for caregivers and other family members.

Dementia is caused by the damage of brain cells. A head injury, stroke, brain tumor or disease (such as Alzheimer's disease) can damage brain cells and lead to dementia.

How is dementia treated?
Some causes of dementia can be treated. However, once brain cells have been destroyed, they cannot be replaced. Treatment may slow or stop the loss of more brain cells. When the cause of dementia can't be treated, the focus of care is on helping the person with his or her daily activities and reducing upsetting symptoms. Some medicines can help people who have dementia. Your family doctor will talk with you about treatment options.

Why do people who have dementia become agitated?
The agitation can have many causes. A sudden change in surroundings or frustrating situations can cause people who have dementia to become agitated. For example, getting dressed or giving the wrong answer to a question may cause frustration. Being challenged about the confusion or inability to do things caused by the dementia may also make the person agitated. As a result, the person may cry, become irritable, or try to hurt others in some way.

How can I deal with agitation?
One of the most important things you can do is avoid situations in which your loved one might become frustrated. Try to make your loved one's tasks less difficult. For example, instead of expecting him or her to get dressed alone, you can just have your loved one put on one thing, such as a jacket, on his or her own.

You can also try to limit the number of difficult situations your loved one must face. For example, if taking a bath or shower causes problems, have him or her take one every other day instead of every day. Also, you can schedule difficult activities for a time of day when your loved one tends to be less agitated. It's helpful to give frequent reassurance and avoid contradicting him or her.

What should I do if hallucinations are a problem?
If the hallucinations are not making your loved one scared or anxious, you don't need to do anything. It's better not to confront people about their hallucinations. Arguing may just upset a person who has dementia. If the hallucinations are scary to your loved one, you can try to distract the person by involving him or her in a pleasant activity.

What if my loved one will not go to sleep at night?
Try one or more of the following if your loved one is having trouble sleeping:

• Try to make the person more aware of what time of day it is. Place clocks where he or she can see them.
• Keep curtains or blinds open so that he or she can tell when it is daytime and when it is nighttime.
• Limit the amount of caffeine he or she consumes.
• Try to help your loved one get some exercise every day.
• Don't let him or her take too many naps during the day.
• Make your loved one's bedroom peaceful. It is easier to sleep in a quiet room.
• At night, provide a night light or leave a dim light on. Total darkness can add to confusion.
• If your loved one has arthritis or another painful condition that interrupts his or her sleep, ask your doctor if it is okay to give your loved one medicine for pain right before bed.

What if wandering becomes a problem?
Sometimes very simple things can help with this problem. It is all right for your loved one to wander in a safe place, such as in a fenced yard. By providing a safe place, you may avoid confrontation. If this doesn't work, remind your loved one not to go out a certain door by placing a stop sign on it or putting a piece of furniture in front of it. A ribbon tied across a door can serve as a similar reminder. Hiding the doorknob by placing a strip of cloth over it may also be helpful.

An alarm system will alert you that your loved one is trying to leave a certain area. Your alarm system may just be a few empty cans tied to a string on the doorknob. You might have to place special locks on the doors, but be aware that such locks might be dangerous if a house fire occurs. Don't use this method if your loved one will be left home alone. Make sure your loved one wears a medical bracelet, in case he or she does wander away from home."

Finally, it is good for all of us to constantly remind ourselves that we are also one day going to be growing much older and would soon be facing the eventualities that could cripple us in more ways than one--that loss of memory, self esteem, dignity, independence and creeping confusion, can be very scaring. Yet we must all learn to cope and hope to forestall this possible deterioration for as long as possible, by learning to take some proactive and preventive steps...

Unfortunately, very little is known with certainty, about how we can exactly make ourselves impregnable from this mental and physical decline and decay. Perhaps decay and decline is inevitable, but we can try lessen the pain and difficulty for ourselves and our loved ones, by understanding that little bit better, the inexorable processes and dynamics that accompany our mental and physical entropy...

“I went to the woods because

I wished to live deliberately,

To front only the essential facts of life

And see if I could not learn what I had to teach

And not, when I came to die,

Discover that I had not lived.”

~Henry David Thoreau

“Medicine is knowledge, judgment, experience, and luck"

These past few days since 25 May 2008 has been a sort of a misty daze with me.

My mother who is going on 77 years, suddenly on Monday became very symptomatic from chest tightness, syncope and extreme fatigue. She has been having hypertension, chronic asthma and probable coronary disease for some time but had elected for medical therapy. She had become fearful of any surgical option after having undergone 3 painful and eventful knee replacement surgeries, the last of which was some 6 years ago. But she has remained physically active and mentally alert, and she certainly knew her own mind.

This time unfortunately, she is diagnosed as having calcific left main stem disease, where the only therapeutic option is bypass surgery. As a cardiologist, this is especially frustrating, because her disease extends into the ostia of both the LAD and circumflex (ironically they are relatively disease-free otherwise) which renders the option of percutaneous intervention extremely high risk.

Datuk Dr Zainal who had kindly consented to help look after her and carried out the angiographic study was also disappointed that we could not proceed to revascularise her via PCI. And so the urban legend that doctors' relatives are often those who present with the least expected of ailments, and complications, persists.

Some say that Lady Luck is simply not with us, or so it seems. But at least, she now has the chance for corrective surgery, for which we are hopeful, because her cardiac function remains very good.

These past few days also provided another insight for me as a relative, a son of a patient. It has not been easy. In fact it is quite frustrating to be on the other side now of the doctor-patient relationship. The agonisingly slow pace of events/test-results unfolding can be unnerving, and it becomes worse when unexpected unfavourable results emerge piecemeal. It is difficult breaking disease pronouncements to any loved ones; relatives and immediate family members are hardest.

Making decisions on loved ones are even more difficult, doubly so when as a doctor, you know so much more about the risks and possibilities of whatever occurrences and events which can go wrong, expectedly or otherwise.

Besides, the emotional sensations of being a son is felt especially acutely, and an overpowering sense of inadequacy and hopelessness seems to pervade my being. Little wonder that it is almost always advised that one should avoid having to treat one's own family members because this is fraught with ethical and objectivity concerns. Unless we are born so cold-blooded, the emotional attachment can be so enervating that it can transform many a physician into a powerless objectively-feeble wreck!

Aside from the emotional clouding and oppression, the choice of therapy or doctors for your beloved ones is also not as straightforward as it may seem. There are so many factors to consider--who you know, who your usual practice mates are, their perceived track records and reputation, logistics and proximity, affordability, availability, our own personal bias and who amongst one's influential family members who calls the shots, etc.

Yet, how many of us as doctors give our patients that right to make such informed or 'biased' options? Almost routinely in day-to-day clinical practice, we make automatic blase pronouncements on diagnosis and therapeutic plans for our patients.

How often do we spare a second thought for the patient/his/her family to reconsider their options, much less offer an opportunity for second opinion? Choice of referring to which other physician or surgeon is seldom considered, much less frequently, even offered.

Furthermore, how many times must our humdrum decisions appear arbitrary and severe to someone who might be justifiably anxious, a little more curious, or demanding or simply confused? But we appear to believe in our own routine judgment, our so-called experience to make that informed or accustomed decision. In reality we do so without the requisite thought that perhaps, if or when it occurs to us or our family members, we might consider otherwise... or would we?

Most importantly, have we not sometimes asked ourselves whether we have made the correct choice or the best possible decisions for our patients, or do we simply believe that we have done all we can, out of routine, hurried or tired and/or even lazy habit? Is it possible that there might arise complications or untoward outcomes because of our mistaken or dismissively/ dispassionately-made decision?

In a recent NEJM article (The Moral of the Story) Dr Perri Klass discusses how these niggling fears, incessant self-questioning and doubt can occasionally paralyse one's own thinking and decision-making process:

"So I have been thinking about the voices that echo in your head when you make a clinical decision — even a relatively low-acuity decision about a child who doesn't seem critically ill. You can't let all the what-ifs terrorize you...

"So you just go on practicing, haunted by stories — stories you're a part of, stories that happen to people you love or know well or take care of, stories you hear from your teachers and colleagues, and the occasional well-told story that enters your brain and lives there . . . all those ghosts that hover at your shoulder or in the dark places of your mind. I had a peculiar sense of multiple levels of precepting...

"I'd like to think of it, in part, as a collective medical memory. And also as a way of honoring the patients who have suffered 'bad outcomes' — and their physicians, too, the ones who are grieving still, who have told and retold these difficult stories.

"Bad things can be only a step away, and we need to absorb that knowledge and yet still do our job. It seems to me right and proper that even in everyday primary care, there should arise these unexpected, unpredictable moments when the collective memory catches at your sleeve, when the ghosts whisper to you to watch out, to think again, or at least to scribble a cell-phone number on a piece of paper towel and call later just to be sure that everything's truly okay."

Perhaps, most times in medicine 'luck' turns out for most patient-doctor encounters, so that far more benevolent outcomes trump the far and few in-between, bad ones.

However, this 'chancy' approach might be that possibly avoidable but significant weakness that undermines better and more consistent health care for our patients. Should we not have better and more failsafe systematic approaches, which would greatly reduce adverse or untoward outcomes or even life-threatening catastrophes?

Or do personal professional decisions honed out of determined knowledge-acquisition, prolonged preceptorships/training, engaged experiences, and a consciously-developing acumen and judgment satisfy our medical therapeutic approach? Luck should simply be too rare a dicey affair to matter... at least that is what we all hope it would be...

I wonder if we could ever realise or make a greater effort to ensure that the practice of medicine becomes more predictable, more consistent and ultimately safer for our patients, as well as for ourselves and our loved ones! For my beloved mother, I hope and pray this will all turn out for the best possible results, and that she be allowed to return to better health soon.