The Dreaded Conversation

“You have a new referral. The physician is worried that Mrs. B is depressed and suicidal; she’s been talking about dying all day long. They plan to up her meds if she keeps talking about that.”

Mrs. B does want to talk about death. She’s recently diganosed with cancer, the 4th time in 9 years. This time it’s spread to her lungs. Her problem isn’t one of depression or suicidal ideation. She just doesn’t know how to talk to her family about it.

“I am ready but I am worried about my kids. I don’t think they want to talk about it again. We’ve discussed it before. They already have copies of my Five Wishes… What should I do?”


Most of us don’t like to talk about death and dying. Those of us who do are often labeled as strange or socially maladroit. In the past few years, websites like The Conversation Project have encouraged a more open and honest discussion of one’s end-of-life care with loved ones and healthcare providers. In many ways, it helps individuals and their loved ones prepare for the dying process and life beyond death.

What have received little attention is the frequency of these conversations, particularly among individuals with chronic health conditions and their loved ones. Year one of Parkinson’s disease may look very different from year six. A 15-year-old childhood cancer survivor may feel very differently about life and death than a 75-year-old survivor when cancer strikes again. Even after the 6th heart attack, family members may still have much difficulty understanding each other’s evolving wishes and worries.

We live in a world where a “quick-fix” is often the most desirable outcome. When death happens “slowly”, many of us have a hard time coping with the process. It is as if we could minimize the suffering if we didn’t talk about it. End-of-life care should be an ongoing discussion, not a dreaded item on a To-Do-List that one needs to quickly “get over with.” It is never too early, too late, or too often. The key is to be as person-centered as possible, without depriving someone of his or her right to speak up.

It would be a shame if we didn’t allow those who would like to talk about death and dying the opportunity to do so. As healthcare providers, it is disrespectful to frown upon individuals and caregivers when they change their mind from time to time. (So what if they do want to update their Five Wishes?) Equally distasteful are crude attempts to pump someone with drugs merely because he or she is expressing fear and sadness, without carefully probing the cause.

Ultimately, we must ask ourselves, who in the room is actually afraid of death and dying? Are we making it even more challenging than it already is?

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Not in Love with AMOUR

Paris. Musicians. Elderly couple. Stroke. Disability.

AMOUR (2012) has all the essential elements to become my favorite movie. Ironically, I remain troubled by my tepid reaction 3 weeks after seeing it while most of my friends within and outside of the aging field laud it as the best aging-related movie in years. If this is the lens through which our society learns to appreciate the intersection between aging, caregiving, disability, and dying, I think we may have a problem.

This is not the first time older couples with significant physical and mental disability are featured in a motion picture. Iris (2001) and Away from Her (2006) both depict dementia and its associated challenges with a steady stroke of realism. Though syrupy, The Notebook (2004) effectively highlights the loving determination of the spousal caregiver.

What sets Amour apart is its voyeuristic exposé of personal care: Multiple wheelchair transfers, laps of leg exercise, sitting through a shower half-naked, incontinence, spoon-feeding, incessant moaning… Though informative to those unfamiliar with aging and caregiving, this painstakingly-detailed presentation feels like an exploitation of an otherwise humbling experience for art’s sake.

Instead of saluting caregivers, Amour manipulates viewers to admire the male protagonist’s tireless and honorable efforts, so much so that his final decision becomes almost justifiable. Upon closer examination, this is a rather unbalanced view of love among chronically-ill couples. Georges is the martyr. Anne’s wishes, her fear of becoming a burden, her struggle with her own decline all pale in comparison.

Amour strikes me as a beautifully-made horror movie with an implicit assumption that all caregivers will eventually crumble; and that certain lives are no longer worth living and should therefore be discarded. By putting the worst nightmare of many caregivers and ailing individuals on the silver screen, it unsettles and infuriates those who continue to overcome their daily physical and emotional struggle without unilaterally deciding to end their loved ones’ suffering.

A redeeming feature is the movie’s subtle yet spot-on portrayal of the adult child-parent interaction. From being completely uninvolved, to wanting to intervene, to becoming extremely emotional without knowing how to offer practical help, the experience of the adult daughter parallels that of the viewers’ as the story unfolds. The general discomfort and unnecessary sympathy from “the outsiders” are what caregivers and ailing individuals can easily see through and relate to.

In a culture that is plagued by fears of aging and disability, any attempt to bring these issues to the forefront has the potential of promoting dialogue and positive change. I am glad that Amour has received this much attention internationally. I just hope that it has not sent the wrong message to those with limited experience with aging. Caregiving can be hard but it isn’t a tragedy in itself. We don’t need yet another story to further alienate the society from our caregivers and the caregiving experience in general.

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There Will Always be Room for Music

Imagine one day you decide to move into a retirement home, would you like to go to one that caters exclusively to people in your profession?

Do you REALLY want to live with a house full of nurses? Accountants? Writers?

“Quartet” (2012) was a quaint little gem about residents in a home for famous retired musicians in the UK. The idea of filling a house with older musicians seemed absurd initially, but a quick Google search led me to a home for retired opera singers in Milan, as featured in the documentary “Tosca’s Kiss” (1984). I also found the Motion Picture and Television Fund Country House in California and the Actors Fund Homes in New Jersey, featured in the documentary “Curtain Call” (2000).

Perhaps it isn’t such a bad idea then?


“You must understand, I was someone once.” — Jean Horton (Played by Maggie Smith)

What made this movie stand out was its ability to showcase the diversity in aging, even within a supposedly homogeneous group. These individuals might have been brought together by music, yet their identities as musicians, retirees, and aging adults were far from identical. While most were able to define the role of music in their lives as something that brought pleasure, it took the protagonist a long time to finally not let music and fame define who she was. By letting go of something she’s nervously held onto for decades, she was able to reconnect with the world and music in a luminous way.

For critics out there who felt that this was a fairy-tale that failed to capture “the deterioration of age,” perhaps it’s time for them to reexamine their own aging stereotypes. Aging does not always involve devastating consequences. Dementia and worn-out hips don’t always have the same impact on everybody, and certainly not all the time. While this movie may have captured the more positive end of the spectrum given its setting in an upscale facility, it is indeed possible for many to flourish as they age. In fact, if I must pick a movie to represent aging and resilience, I will choose “Quartet” over “Amour” any day.

p.s. I still have my doubts about letting a huge group of retired musicians live together but it’ll probably be more bearable than a house full of psychologists. What do you think?

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All Things Visible and Invisible

A Spanish-speaking patient with advanced dementia grabbed her chest and grimaced. Everyone thought she was having a heart attack. When I asked her what’s going on, she told me her soul was hurting so much that she knew she’s going to die.

“The soul?” When I told the nurses, they rolled their eyes as if one of us had lost our mind.

And where is the mind anyway? Think about those who are left with a brain that looks like a block of Swiss cheese, yet manage to come up with the most brilliant ideas. It used to amaze me that some of my “confused” dementia patients were keeping better track of my daily schedule than I did.

I believe in the mind and the soul. Even my most unscientific side knows that while physically intangible, these are not just lofty ideas that are abused across the centuries by poets, philosophers, or, well, psychologists.

Will science ever identify exactly where our mind and soul reside? Does it matter? All those required readings on Aristotle, Descartes, and Damasio didn’t answer my question. Think about those whose heart and brain are relatively intact and active, yet never make it out of the hospital “alive.” So, we “saved” their lives… Or did we?

Science is great but reductionism is not the answer. Unfortunately and fortunately, we are more than a dish of cells. There is something remarkable and intriguing about human beings. It is often possible for those with known physiological anomalies to maintain and retain control over their mind. It also is more common than you think to find a living body that appears to be without a soul.

What then must we do? How much could we change; how much could we maintain before we’re out of time?

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Acceptance and Change

Acceptance is a recurring theme. When individuals are able to accept their limitations and losses, many are able to identify new avenues to continue to live a fulfilling life. When we struggle with our mind and body, sometimes it’s only going to do more damage. Those who are afraid of suffocating end up hyperventilating. Those who struggle to fall asleep end up wide awake. Those who blame themselves for feeling bad end up more depressed. Those who are angry with their pain end up with more muscle tension… and the list goes on.

If acceptance is such a wonderful thing, why does it still feel awfully heartless sometimes to “help” people come to terms with the fact that they will never be able to see, breathe without a device, walk, dance, or work again? Why do I feel like a guilty accomplice rather than an honest advocate when we encourage individuals to follow their medical treatment regimen despite knowing as well as they do that nothing is going to reverse the disease process and everything is going to bring upon a ton of side effects? Perhaps the assumption is that people want to live forever. What if they don’t? What if their quality of life and self-determination truly matter more than how much longer they get to live?

Even more disturbing is when individuals suffer because of undue stress inflicted upon them by the medical, social, or legal system. We can talk about stress management, assertiveness, positive reframing, and all those excellent “coping skills,” but even the most assertive person can’t usually change the unfortunate reality of being asked to fill out the same form 5 times before the medical secretary finally returns her call. If someone is already lacking physical and mental dexterity because of her illness, why does the burden have to fall upon her to ensure her physician’s receptionist doesn’t screw up her next appointment? Instead of helping people learn to accept the inadequacies of the system and not “over-react” to unprofessional behaviors, can’t we help re-teach some of our colleagues some basic social etiquette as well?

Acceptance may indeed prolong life; and potentially enhance one’s quality of life. It certainly feels good to bear witness to the courage or hope or inner strength or whatever they think we have evoked or instilled in them, once they have come to accept the inevitable deterioration and loss. But acceptance isn’t resignation. The issues they are dealing with aren’t “all in their head.”

The second part of the serenity prayer is as important as the first. Perhaps each and every one of us could help raise awareness of changes that need to be made, and try to make them happen?

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From Cottonfields to Cornfields

There are two things I remember about the last time I saw my great-grandmother: She was a centenarian. She was still actively working in the fields. I was too young to find out how, when, and where she eventually died. Not on the farm, I think.


Not too many nursing homes are located among cornfields or cattle farms. Yet, for a significant proportion of long-term care clients, the farm is where they yearn to die in. We can try to make each resident’s room as “home-like” as possible, but can we do  something about what’s around the facility as well? Can we plan recreational activities that involve elements of seeding, growing, harvesting, or breeding? How about field trips in the fields? Are there wheelchair-friendly and accessible tractors that one can ride on?

Our long-term care population is becoming increasingly diverse. We are doing a fairly good job in catering to urban dwellers who are now stuck in a facility that is likely quite a distance from the city center. However, being in a suburban area isn’t the same as being in a “rural” area. Even the dust in the air is not the same.

Cultural competence and awareness extend beyond racial and ethnic differences. Knowing the history of cottonfields is nice, but knowing the place of cornfields in some residents’ hearts matters too.

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Let’s Talk about Death


The room number flashed on my screen. As the elevator slowly climbed, I made a silent assessment of how I would likely react.

Only 24 hours ago, I bid farewell to someone for one final time in the same room.

I stepped inside, only to be greeted with such an overwhelming amount of hope that it’s almost suffocating.

…Here we go again. The frailty of life is always the bigger picture, although each story unfolds differently. In fact, some of them won’t end in death. Well, not yet.

Whenever someone died, I like to give myself time to reflect on each person’s history and legacy. My meticulous mental calendar does not give preference to birthdays over deaths. I allow myself to feel sad, happy, disappointed, inspired… whatever it may be. That’s how I learn, grow, and “move on.”

I am comfortable with the way I deal with death and dying. What I am uncomfortable with is our healthcare system’s relative lack of competence in dealing with death besides fighting it, frowning upon it, or forgetting about it. It’s probably easier for those of us in the “softer” speciality areas to reach out. Anecdotally, I seldom hear surgeons discuss the death of a patient, unless it is the technical aspect of things. A recent review highlights how little systematic research has been done in the past 2 decades to help physicians deal with grief:

While everyone deals with issues of death and dying differently, how we cope may indirectly compromise job satisfaction and quality of care. Just because one has seen thousands of deaths doesn’t mean one is now an “expert” in coping with death. Within healthcare settings, it’d be nice to encourage ongoing death education and grief support to staff at all levels of care.

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