Let’s Talk About Death

Or, more precisely, let’s talk about life before we encounter death.

I work in healthcare and recently attended the Coalition for Compassionate Care of California‘s annual conference on the topic of hospice and palliative care in Newport Beach. The conference brought together clinical types (physicians, nurses and other patient facing staff) and non-clinical types (hospital administrators, marketing and communications individuals like myself, volunteers and members of the public), bringing together a community of experts to learn and discuss advancements and changes in the fields of palliative and hospice care.

CCCC logo

Coalition for Compassionate Care of California, the organization which hosts an annual conference on palliative and hospice care.

While the conversations we had revolved around palliative care – an area of healthcare focused on relieving patients’ pain – and hospice care – a slightly different part of healthcare revolving around relieving pain during the end-of-life or during a terminal illness, some of the topics and speakers drew our attention towards questions such as:

  • How often do we talk about death as a society, from a casual-dinner-conversation type of conversation?
  • How is it detrimental to our society to be so afraid to speak about death?

Many of us can get incredibly involved in financial planning for our future – from the time we obsess over our 401(k)s and retirement plans, to ensuring that we have the proper insurance – but thinking or planning about our death is often seen as too morbid or uncomfortable.

  • How can you make your final wishes known if you haven’t faced that fact that you might one day pass?
  • If we do so much around planning for birth, why do we not talk and plan as much around death?

Is death something that you feel comfortable talking about? Do you wish you could feel more comfortable in talking about it?

 

Jen Burstedt

Regrets of the Dying: My Reflections

Deeper than my usual blog post and a slightly somber note to start out the week, I felt compelled to share and add a few reflections of my own.

Bronnie Ware, an Australian blogger, wrote an article about the top 5 regrets of the dying. It’s a summary of reflections and lessons learned by others, and it was so good, I’m sharing it on my blog.

Here’s where you can find the article.

Snowy trees

The core theme of the regrets, from my perspective: do we reflect enough about what true authenticity means in our lives? Are we honest with ourselves and others in all senses of the word?

Our own dissatisfaction and unhappiness are brought on by ourselves. In viewing this in the positive sense, Ware is basically saying the we need to:

  • Being honest to acknowledge who we are
  • Being honest to acknowledge what makes us happy
  • Being humble to know that the office – or our business, or work – will always be there if we need it, but shouldn’t take the place of relationships with others, and that our absence from these places won’t stop the world from spinning.

 
Wise words, Bronnie Ware.

 

Are you living a life that you think you’ll be happy with when it reaches its conclusion?

 

Jen Burstedt

Stirring Empathy in Others: A Video

Empathy: how do you teach someone to look outside themselves?

I thought this short video did an amazing job of showing a glimpse inside people’s heads to teach (at least, in the short term) what is means to be empathetic.

Kudos to the marketing and communications team at Cleveland Clinic who produced this! Also, thank you to Connie Davis, Dr. Damara Gutnick and Kriss Haren for introducing it to me through their motivational interviewing workshop in Burbank.

empathy video by the Cleveland Clinic

A video made by the Cleveland Clinic on “Empathy: The Human Connection to Patient Care.”

Motivational Interviewing: Working Together for Change

How do you motivate someone else to change their behavior when they haven’t previously responded to your advice, knowledge and repeated expertise, and is ambivalent about making change?

Yesterday, I finished day 2 of a 2 day workshop where I started to learn a skill that may prove to be more powerful than persuasion, at least in the context of changing someone else’s behavior who is ambivalent about something in their life: motivational interviewing.

My day job at California Quality Collaborative (CQC), a program of Pacific Business Group on Health, works to educate medical groups, health plans and hospitals to teach specific trainings on quality improvement and build capacity of individuals to sustain the change through skills and methodologies. This workshop was one of the trainings we organize.

The key message of motivational interviewing: this is a skill that allows you to work more effectively with someone and change their behavior (and there is even clinical evidence to support it).

Instead of demanding that someone changes, you first:

  • Treat them with compassion
  • Accept who they are
  • See your relationship as a partnership
  • Work in the spirit of evocation (compassion, acceptance, partnership, evocation = CAPE)

4 interaction skills are crucial to engaging with someone for motivational interviewing:

  • Open ended questions
  • Affirmations (affirming things that are good about a person but not complimenting someone)
  • Reflections (reflecting or repeating back to the patient what was said)
  • Summaries (summarizing what the patient said)

You can learn so much from people and build trust much faster when you use compassion, acceptance, partnership and evocation – and by asking people genuine, interested questions that leave space for answers.

Have you heard of motivational interviewing?

What has happened in the past when you try to help someone make a change in their life?

 

Jen Burstedt

On Alzheimer’s Disease, Jet Lag and Empathy

After flying more than 14 hours to come back to San Francisco a trip to Europe with an additional 6 hours of delay in the Frankfurt airport, I knew that the jet lag once I arrived home would catch up to haunt me with a vengeance. It was only a matter of time.

Gardening for Alzheimer's.

According to The Telegraph, gardening may help Alzheimer’s sufferers by providing mental stimulation.

I managed to sleep 4 hours on the plane, and then a terrible 6 hour stint the night I landed. The next morning, when my alarm went off, I felt bright and refreshed… but I still knew that the wave of jet lag would hit me like a crowbar – sudden, unsuspected, forceful – later that afternoon.

What do you do in your workday when you only have a matter of hours to be highly productive? All of the most difficult things should be done in the morning, when you still have energy. And so that is what I did: the difficult conversations, projects and problems were for the morning.

The wave of jet lag finally did come. Around 4 pm, I started to feel my mind shift. It was as if a part of my being were slipping away. I felt light – still completely aware that this is just the effects of jet lag – and was able to embrace the feeling since I knew that a long night’s sleep would be the cure.

Imagine being aware that you were at the beginning of a journey that would take away your cognitive abilities – similar to being struck with jet lag – but worse. In the beginning, it would only be the ability to write or speak. Perhaps you are trying to think of that name — what was that name, of your high school best friend? Why can’t you remember details of your life, like where you got married, or the name of the neighbor’s husband, or… And then it gets worse: you can’t read or write. You fall frequently because you can’t coordinate complex movements. You can’t recognize family or friends. You eventually forget how to walk, swallow and breathe.  

This is the typical progression of someone with Alzheimer’s Disease.

This disease affects an estimated 5.2 million Americans (5 millions being adults over 65) in the United States in 2013, is 6th leading cause of death. Yet it’s a disease that we can relate to, and one that affects many of our parents or grandparents.   

Dr. David Hilfiker, a retired physician, is 68 years old and has been diagnosed with Alzheimer’s Disease. Instead of sitting back and letting the disease take over, Hilfiker blogs about the progression of the disease from the point of view of a patient, with a perspective he didn’t have the majority of his career as a doctor. He’s assisted by a computer and friend who serves as the editor of the blog.

The exciting thing is that Hilfiker is not alone, and that other patients are putting out their stories into the world.

What could blogging do for the support of other stigmatized diseases and lesser known maladies? To start, increased awareness, support and empathy for the individuals suffering these diseases. Being able to go into the mind of someone who is afflicted by a debilitating illness that is not visible from the outside seems like a true gift. I hope that blogging becomes more regularly prescribed in Alzheimer’s Disease treatment, as well as within other areas of healthcare.

A few other resources where self expression, art or literature is used as part of the healing process:  

Embracing Gattaca: Why I’ve Decided To Get My DNA Genotyped

Gattaca, the 1997 science fiction film based in the “not-too-distant future” featuring Ethan Hawke and Uma Thurman was one of my favorite films ever since I had seen it days before summer vacation in my high school biology class.

Gattaca-poster-with-rocket-ship-and-double-helix

Movie poster for Gattaca, created to generate buzz about the movie.

 

The film shows viewers a fictional future in which babies’ genes can be chosen before birth for parents with the means to pay for it. Vincent Freeman is the protagonist of the story. He’s one of the unlucky ones to have had parents who didn’t want to consult their local geneticist to cherry pick his features and characters. Vincent is born into the world with suffering from myopia, potential heart troubles and other characteristics that classified him as a lower class human being in comparison to the privileged humans whose features were carefully selected and flaws removed.

 

“I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science,” explains Vincent.

 

When 23andme came out with its DNA genotyping services in 2007, I was wary and slightly critical. With the cautionary tale of dystopia as created in Gattaca still part of mind – plus a prohibitively hefty subscription-based fee of $299 per period, getting my DNA genotyped by 23andme, the privately owned biotechnology company owned in part by Google’s Sergey Brin’s wife didn’t seem like a great idea. December’s price drop to an apparently permanent level of $99 prompted me to reconsider and perform a bit of research.

 

After doing some research, I’m convinced that I can and should get my DNA genotyped with 23andme.com for the following reasons:

 

Privacy is maintained. 23andme has taken measures to make sure order information and genetic information are kept separate.

 

Legislation in place. 2008’s Genetic Information Nondiscrimination Act (GINA) of 2008 makes it illegal for Americans to discriminate based on genetic information within healthcare and employment – which will need to be further tested as time goes on, but the preventative legislation in place ensures that some kind of guardrails are in place against genetic discrimination.

 

Benefit the greater good. As this Forbes article mentions, the secrets of human genetic DNA will be based on the number of people who participate. More participants in 23andme’s system will allow for crowdsourced genetic information, meaning the more people participate, the more meaningful the rest of the individuals with DNA genotyped by 23andme will be.

 

With an easy sample collection procedure, the next step I will need to take is sending the company a test tube full of saliva.

 

Far from worrying about having my future spoiled for me or genetic discrimination, I see genotyping as an opportunity to strategize about what kind of life choices I can modify in order to maintain optimal health. Additionally, my view is that 23andme can provide insights that could arise from the DNA genotyping (as 23andme provides probabilities and likelihood metrics at the individual level for over 240 health conditions and traits). These insights would allow me to take precautions and be cognizant of future pitfalls that I might otherwise be unaware of as an individual who sometimes takes her health for granted given a relatively disease and accident-free past.

 

Getting my DNA genotyped is about being an empowered healthcare consumer, getting a step closer to better managing my own health and healthcare records.

All-Access Electronic Healthcare Records? Still A Ways To Go

As I filled out four long pages of medical history forms while at a new doctor for the second time in two weeks, it dawned on me that I should be keeping track of my own health care information. Of course – why had I thought that I should rely on a fax from one doctor’s office to the next when I could take the matter into my own hands?

Fax machine

I bought an all-in-one printer-scanner-fax machine but have still never used the fax machine… Yet doctors offices and hospitals use these every day!

 

With Google Docs and the kind of record keeping that I engage in on a regular basis for work and volunteer efforts, why was I not already doing this with my healthcare records?

 

It hadn’t occurred to me until recently, when a few trips to new doctors forced me to rack my brain multiple times and scribble down half-guessed answers to my own health history.  These recent experiences were reminders that, no, transferring healthcare information still is largely the burden of the patient – if you, as a patient, want to make sure your records are complete, accurate and timely.

 

As someone who regularly checks on my bank statements just to make sure all charges are legit and no fraudulent activity is going on with my credit cards, why wouldn’t (shouldn’t) I be just as careful and keeping tracking of my health history?


We are in an age of technology and, though personal healthcare records have started to become more prevalent, half the battle is being proactive and diligent with your electronic healthcare records. As a reminder, the fax machine is not dead yet!

This is a prelude to my review of Dr. Eric Topol’s The Creative Destruction of Medicine, which I just started reading today. I’m excited to hear Dr. Topol’s thoughts about the convergence of technology and medicine.

Proudly powered by WordPress
Theme: Esquire by Matthew Buchanan.