Monthly Archives: November 2014

A Finer Point

Unless you’ve been completely unplugged, you likely heard the story of 29-year-old Brittany Maynard who opted to end her life with physician assistance in Oregon at the beginning of November.

Her story was big news just 30 days ago. Media focused on major points: her age (“so young”), her family’s move to Oregon from California so that she could avail herself of a death with dignity, and her plan to drink a cocktail that would allow her to peacefully go to sleep surrounded by her family and best friends. Opposition of course touted that life is too precious to be left up to individuals to decide when enough is enough. Some segments of society lamented that surely there was more that could have been done to save Brittany’s young life (or prolong her life) or that “suicide” was not the “right” answer.

But as I read several accounts and watched Brittany’s videos, I saw a finer point in her story. To me, even more important than the type of cancer she had, or her age, or even her decision to end her life, something else stood out. She made her own decisions based on research she read about her disease and the survival rates. She weighed risks and benefits of treatment, and she understood that a cure for her particular cancer didn’t exist. Brittany had conversations with her husband, her parents and her best friends about how she defined quality of life and how she wanted to control her eventual pain. She lived her life up to the very last day her body allowed, and she died as she planned.

The finer point: She made decisions and she talked about them with people she loved. Yes, it is difficult to think about our eventual deaths (our own or of those whom we love). I imagine it was very difficult for Brittany to contemplate death at the young age of 29. I also imagine it was extremely difficult for Brittany’s mother to watch her daughter go through this process and to learn of her decision to stop her life before it was no longer recognizable to her. The point is, this is never an easy conversation or a simple decision. But, the more we can talk about it, the easier it becomes. Not necessarily to embrace death, but to accept that it will happen. To plan for things we can contemplate as well as things we cannot and to make decisions based on how we define quality of life. And, finally, to talk about our decisions with those we love so when (not if) they are forced to make decisions on our behalf, they will have the knowledge of our decisions and the confidence to advocate for us when opposition arises.

Caring Choices salutes Brittany Maynard and others like her who have opted for a death with dignity. We also support those who want to “fight” through disease and treatments with the hope for additional life. Our mission is to support families having conversations and making decisions and we hope that everyone experiences the kind of closure that Brittany’s conversations likely provided her loved ones after her death.

Stress Tsunami

By definition, depending on the resource used, a tsunami is also called a tidal wave or seismic sea wave. No matter how you define it, history has taught us again and again of the enormous devastation and loss these events can bring to coastal regions across the world. Millions of dollars have been spent on ongoing research into early warning systems and evacuation planning to help eliminate the costly destruction to lives and property from this and other natural forces of nature.

Preparation is the key to success in most every situation we can encounter in our lives. Musicians and actors rehearse for shows, politicians delegate supporters to plan rallies and take polls, spiritual leaders pray and meditate to appear before groups to deliver their messages, athletes exercise and study opposition gameplay of archived footage, all in hopes of having that critical edge to deliver the perfect performance on stage, platform, pulpit or field. As well as soldiers, doctors, volunteers, and students across the world, the idea is of a similar nature. We have a better chance to win, survive or learn if we take the time to prepare.

Would the same benefit from ongoing preparation not also help to lessen the possible stress of death for us as well? In fact, death is the one event in our lives we all have a front row seat for. We don’t all have an equal amount of time for planning as one would for a game, speech, lecture or appointment. And disasters do not always have equal warning. Yet we spend countless hours planning for these things. Very few people really plan for their death. Unless we are diagnosed with a chronic or slow progression of disease, most of us go along day to day with no regard to the eventual deadline we are given. Satisfied to concern ourselves with letting others deal with things after we cannot. For myself, I would not want my wife, sons or family to needlessly struggle with the wave of stress of making choices for me that I can make now.

Caring Choices supports and encourages conversations for like-minded people who also feel the burden of care may fall unwanted onto family, friends, or others in situations where gradual or sudden loss of independence necessitates. If you have ever known someone or directly been affected by the inevitable responsibilities that befall the recipient of a “Stress Tsunami” than possibly you may understand the importance of advanced planning. If you have not, but would like to better prepare for the future to decrease the stress of decision making on your family and loved ones, please contact us.

A Box of Chocolates

While enjoying wings and pizza with good friends last night, the movie Forrest Gump was on television in the background. In that movie, Forrest often says his mother always told him life was like a box of chocolates and you never know what you’re going to get. I think we can dig down a little deeper and say that in getting older and in dying, we also never know what we’re going to get.

Anyone who’s ever received a box of chocolates knows that there is usually (not always) an illustrated guide included to tell you what is inside the chocolates. You can then more easily choose which pieces to eat, rather than poking your finger in each piece to figure out what it’s like inside. For me, those thick, creamy fruit-flavored centers simply ruin the chocolate and biting into one of them without the guide is a little, well, frustrating. In that respect, I think healthcare decision-making can also be like a box of chocolates.

We don’t know exactly what’s ahead for our health, or how/when changes to our physical and mental states will impair our abilities to care for ourselves or to speak for ourselves. But I suspect that many of us know a few things that we don’t want as the ravages of time and declining health overtake us. As well, there may be a number of things we want to accomplish before time and health run out.

Talking about the kind of care you want (or don’t want) and writing down your preferences can give your loved ones the “illustrated guide” to advocate for your choices, prepare themselves to make decisions on your behalf, and to relieve the burden of decision-making from their hearts and minds. It gives them the tools to see what’s “inside the chocolate” without “poking their fingers” at multiple options and hoping they find something you would like.

Caring Choices can help you prepare the guide for your loved ones so they don’t have to make guesses about what you like (want) or don’t like (want). Each of us has our own preferences, but without sharing them we may end up with the cream-filled centers that we don’t like (want).

Where are the answers?

“Elephant in the Room ™” is a new discussion and decision tool my wife created and I have helped bring to existence. It involves a series of 96 cards in 4 categories:

Values and Beliefs: to entice thought on one’s belief systems of life without restrictions.
Complex Care: using multiple real and potential “what if” situations which could possibly impact the care and needs of a dependent, critically advanced, complex disease or care circumstances.
Definitions and Resources: to assist in the exploration of who-what-where-when-how-why of caregiving and preparation for future needs as time, trauma or disease dictates.

4: People and Places: to stimulate an examination of the resources, discover and help establish a plan for the utilization of resources for current and/or future needs.

Each of the 24 cards are formed in the shape of an Elephant Footprint in representative of the “steps” that are often necessary to achieve the most positive outcome for easing the stress of sudden or chronic life changes we all will eventually face someday.

During a recent conversation about “The Elephant in the Room^TM” I was asked the question: “Where are the answers?” Every time I have an opportunity to discuss end of life issues, advanced care planning or general care for the declining independence of someone, I am always eager to share our Elephant and offer it as an additional motivator to encourage continued discussion and thought.

The variety of reaction from people after they see the Elephant is as individual as each personality could be. The most important impression I try to make on everyone is that there are no answers that will apply to everyone in every situation. What is best for me may not be best for you. What is desired by me may not be acceptable to someone else. What is needed for each of us may be impossible to determine ahead of time. But what is most important of all is that there are discussions along these lines to help families and caregivers understand where to begin in coming up with answers.

Life is too short to ignore the inevitable consequences of living. And to spend all day focused on death is certainly no aim I have intended. After 20 plus years in healthcare, in a host of different environments, I can only say that the softest path for an exit from this earth is not always the easiest. I once read something that said we have replaced the need for comfort above the need for happiness. In relation to pain, planning, and lifestyle, I can see the truth in that statement. There is certainly a time for pain medication to ease suffering, but not at the expense of a little exercise to eliminate potentially avoidable, severe pain if possible. And not with a complete disregard for the benefits of behavior modification or non-narcotic alternatives. Not all plans are perfect; ongoing discussion and change is needed to adjust plans as options become available and progress brings about more choices. I understand the right of everyone to make their own lifestyle choices, but there are very few of us who are incapable of learning new ways to live if we are facing serious consequences from the “normal” routine of our habits.

Caring Choices has developed “Elephant in the Room™” to be a guide for the inspiration of thought. Not to give answers. We are hopeful that the tool we have created will bring a sense of relief and comfort to a discussion that is all too often filled with fear and despair. Please join us in the hope we share that review of the Elephant can bring family, friends, and caregivers a little closer to understanding what is important to all of us when there becomes a need to finally acknowledge that there really is an “Elephant in the Room™.”

When Miracles Don’t Happen

This morning I watched a video on Facebook. The 10-minute video shared the story of a young couple and their pregnancy. Spoiler alert: from a very tragic prognosis a healthy baby boy was delivered. A miracle some might say. What impacted me the most from this video was that although this couple had a very strong faith in God, and they prayed for a miracle, they also planned for the worst. The husband spoke about planning for his as-yet-unborn son’s funeral and making the necessary arrangements based on the medical prognosis and the likelihood that their son would not live through the pregnancy. And so, they planned for something they did not want to face. They did not give up hope; they did not lose faith. They planned in case a miracle didn’t happen.

Planning for the worst does not diminish Hope. Planning for death does not negate Faith. Making healthcare decisions acknowledges our finite life, helps our loved ones know what to do when things go “wrong”, and provides opportunities to experience the richness of life and quality of relationships before we die.

Plans, discussions and decision-making allow us to focus on what is most important at the end of life: being able to spend and enjoy valuable time with our family and friends. Planning emphasizes Love.

Caring Choices hopes that miracles happen for everyone. Many of us will simply go quietly into the night while others may still have lengthy experiences with chronic illnesses that slowly claim our lives or acute terminal illnesses that require quick decisions. Hope, faith and love are important in life; they can become even more important when facing death.