Opinion

Tapping into the power of hope

Recently, I had the opportunity to visit France. It was a trip that fell into my lap fortuitously. After two years of pandemic isolation, the opportunity to travel again was a welcome feeling of normalcy returning.

Visiting the wine country in Bordeaux and seeing the monuments and buildings I had only knew from books, movies and my imagination was a dream come true. From the Eiffel Tower to the Arc de Triomphe to the Louvre, this could truly be considered a “bucket list” kind of trip.

We visited a winery previously owned by Bertrand de Goth, also known as Pope Clement V, and ate dinner in a room made from the spare parts of the Eiffel Tower. We also visited Saint-Emilion, named for an 8th century Breton monk from Vannes who chose to take his retirement in a natural cave close to the village. This compassionate man left his native Brittany to take himself away from society and to devote his life to prayer. Through his actions and his generosity, his name became well-known far beyond the valleys of the Dordogne and numerous disciples would come and join him.

It wasn’t just the famous sights, though. It was our attempts to negotiate a ham-and-cheese omelet, cooked medium, with the omelet chef who didn’t speak any English. It was a baguette in one hand and a café au lait in another. It was seeing families together on the shores of the Garonne playing volleyball and basketball at 2 p.m. on a Wednesday or lounging with a beverage in the Champ de Mars in the shadows of the Eiffel Tower. It was the fact that almost every single person I met greeted me with “Bonjour” and a smile.

So, what does this have to do with palliative care in Canada?

What if you were suffering from a life-threating illness and you had a life-limiting prognosis. What if your time was short and you still had a bucket list?

Enter Oneday Dreams.

A terminal diagnosis often prompts individuals to reflect on their lives, bringing wishes, regrets to the forefront.

Oneday Dreams serves Canadian adults living with a terminal illness by facilitating end-of-life dreams that offer joy, inspiration and comfort while focusing on life and living. It was founded on the belief that creating special moments can mean everything to those living through their most challenging days. A terminal diagnosis often prompts individuals to reflect on their lives, bringing wishes, regrets and assessments of satisfaction to the forefront. Oneday Dreams’ purpose is to bring these dreams to life.

Dreaming. Is. Important. Dreaming can give hope and affirm the value that life still has, even when it is limited in time and potential. Dream fulfillment provides an opportunity, if even for a short time, to live fully – physically, emotionally and spiritually unified. Perhaps most importantly, fulfillment of a dream is a way to recapture how it is to simply enjoy living.

There may be some clinical benefits of dream fulfillment at end-of-life, too. Dream fulfillment appears particularly well-positioned to promote modifiable protective factors such as hope, optimism, positive emotions, perceived support and positive expectations for the future. These factors can help patients adjust to stressors through acceptance, positive thinking and/or distraction.

But wait, there’s more. Positive outcomes also extend to loved ones. Research has found that Make-a-Wish interventions have had positive effects on the siblings of sick children, fostering positive memories, sharing and a greater sense of comfort and assurance about a loved one’s illness. Caregivers have benefitted from the wishes’ ability to create a better sense of emotional well-being for their loved ones as well. Ultimately, having a dream, having positive expectations that it will be granted and feeling a sense of accomplishment and satisfaction when it is fulfilled can generate hope, positive emotions and optimism to both patients and their families.

Learning about a patient’s hopes and dreams may not only create an opportunity for a special intervention but could also improve goals of care conversations and assist doctors in crafting a care plan that will optimize the chances of these dreams coming true. Findings from a recent study out of Stanford University suggest that bucket-list conversations can be a simple strategy to help patients consider important health decisions.

Despite our best efforts, most goals of care conversations remain largely provider-centred and drive the clinicians’ (and health-care system’s) needs to have clarity in the patient’s treatment preferences. In a narrow sense, these discussions are limited to understanding one’s resuscitation preferences and places of death. Surely this is important, but it is also focused exclusively on end-of-life treatment choices and often misses matters most to patients – their desired milestones and accomplishments and how they wish to live.

There’s a communication gap here, and it could result in patients unknowingly choosing treatment options that undermine or subvert their life goals. For example, if I didn’t know a patient wanted to attend a family wedding, I could inadvertently suggest or initiate a treatment that could prevent them from doing so. Treatments should not be instituted without ensuring the patients’ understanding of its life impact. By learning about people’s goals, we’re better suited to promote informed decision-making when discussing treatment options. Beyond this, learning about someone’s dreams, what one more perfect day would look like for them, we can better treat the person behind the disease. So, perhaps the real worth of dreams at the end-of-life isn’t the activities, experiences or goals themselves, but the hopes, values and motivations that lie behind them.

Hope is a powerful thing. I was introduced to a book, Using the Power of Hope to Cope with Dying: The Four Stages of Hope by Cathleen Fanslow-Brunjes. While I recommend reading the book, the premise is simple but elegant. When faced with a life threatening and terminal illness, patients may often state that they feel hopeless. Instead of a state of hopelessness, Cathleen describes stages of Hope:

·      Hope for a cure;

·      Hope for a treatment;

·      Hope for quality of life;

·      Hope for peace at end of life.

It is the “hope for quality of life” that Oneday Dreams fills. While palliative care excels at providing end of life care, we are always looking for ways to make those last days, weeks and months meaningful for patients and families.

My favorite Dream to date is the story of a patient being cared for at our hospice in Windsor. A big fan of Dwayne Johnson, a.k.a. the Rock, Oneday was able to arrange a video from Johnson from the set of his show Ballers. It was not just the effort to make the video, it was the detail he put into.

Mike Bennett, one of the founders of Oneday Dreams, says the requests are as unique as each individual who dreams them up. From a private screening of a favourite movie in a theatre filled with close family and friend, to watching a Toronto Maple Leafs’ game after a private tour of the Scotiabank Arena and a meet-and-greet with the team, no dream is too big, and no dream is too small. If the dream is unattainable, Oneday Dreams will work with the dreamer and/or loved ones to try to modify it or suggest a more achievable alternative. Indeed, the progress of virtual reality means that even patients who can’t leave their home or hospice may still be able to experience “trips” off their bucket list. I recently tried a pair of VR googles and the immersion was so real, I had to get out of the way of a stampede of elephants on the Serengeti.

As the great Detroit philosopher Marshall Mathers reminds us:

“Look, if you had one shot, one opportunity / To seize everything you ever wanted? One moment / Would you capture it or just let it slip?”

I have been very fortunate in my life. I have knocked many things off my bucket list. From the Great Wall of China, the Potola Palace in Tibet and now the Eiffel Tower, I have seen and done many memorable things. And I hope to knock a few more off that list now that the world is closing in on a post-COVID state.

But even more than that, my hope is that every patient facing a life limiting illness gets one last kick at that bucket list too.

The last word goes to co-founder Bennett:

“In end-of-life care, hope can be conceived as the hope that time still has something to offer patients and their loved ones, and we must take the time to learn about how these individuals want to spend their time – this includes dreaming big.”

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Authors

Darren Cargill

Contributor

Dr. Darren Cargill is a fellow of the College of Family Physicians of Canada, the Royal College of Physicians of Canada, and American Association of Hospice Palliative Medicine. He is the past medical director for the Hospice of Windsor and Essex County and lead physician for its community-based Palliative Medicine Program. He is one of only two certified hospice medical directors in Canada and has his designation as a certified Canadian physician executive.  He received HPCO’s Larry Librach award in 2017 for excellence in leadership and advancing palliative care through mentorship.

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