Monthly Archives: August 2013

Do I Have to Think About this Now?

In a recent conversation with one of our business-savvy friends, he said that he didn’t want to think about his death now, let alone talk about it. “I’m young and healthy. Why would I want to think about something that probably won’t happen for several more decades?”

It’s a common refrain in our conversations with people of good health and sound mind. We easily talk about our parents’ aging processes, their ailments, and their medical crises. We compare notes on juggling caregiving for elderly parents and running our own households with children, jobs, and activities. As our parents age, we might venture to imagine what life could be like when our parents are no longer with us. We don’t, however, imagine what life will be like for our sons and daughters, our partners and spouse, our friends – all whom we love – when our health changes due to medical crisis, accident/injury, or terminal diagnosis.

A palliative care physician whom I greatly respect once said that preparing for our own health decline (and death) by making and sharing our care preferences now may be the “last loving act we do for our loved ones”. We expect that we will have time to prepare for our deaths when we are older (by whatever number we use to define “older”). Yet few of us contemplate what will happen if an accident or illness renders us unable to communicate. So, just for a few minutes right now as you’re reading this, STOP and consider this scenario:

You have just been involved in a car accident. You are unresponsive as the ambulance delivers you to the local emergency department. Someone from the hospital calls your next-of-kin telling them to come to the emergency department right away. You are given no other status report over the phone.

Do you know what questions your loved ones might face upon receiving the call that you are unconscious in the emergency department?
What will your loved ones’ emotional states be?
Will they be able to think calmly and clearly about what you would do or say about what happens to you?
Will they hear and comprehend what the healthcare professionals are telling them?
Will they know what YOU want in this situation?
Can/will they carry out your wishes?

If your initial response to any of these questions is “I don’t know”, it is a good time to consider having a family conversation about expectations and decisions should a traumatic event (accident, work injury, etc.) occur. With this scenario, you can see that knowing a loved one’s wishes is important even when someone is “young and healthy” and not facing a terminal diagnosis or frail old age. This is why we do need to think about “this” now … and talk about it … and write down our wishes. Open communication about these kinds of “what if” scenarios can go a long way in helping our loved ones know what to do if that call comes from the emergency room, or the intensive care unit, or the oncology physician, etc. Knowing what to do and when to do it can help ease the emotional burden of decision-making by eliminating the “did I do the right thing” questions.

Contact Caring Choices. We can help you contemplate the “what if” questions.

@ 2013 Caring Choices

It’s Personal

There are few experiences in life to prepare one for the end of it. There are books written about the end of life, near-death experiences, and caregiving experiences. Collections of prayers, stories, memories, poetry, and songs expose only a small fragment of the authors’ personal journey. As time unfolds into memories, each one of us must face our own personal end of life journey.

In my youth, fear and fascination merged with respect and I chose to delve into learning more about death and the many ways in which it can occur. In college, I wrote a letter to Death. In life, I have become a companion to death’s reality. In my hospice nursing experiences, I have encountered every facet of the end of life experience. Some patients have approached their journey with a brave smile, a stoic nature and an undeniable devotion to their family and their faith. Others have chosen a path of denying the inevitable until the very end. Still others have embraced the love that surrounded them and squeezed every last ounce of happiness and joy with loved ones while taking their last breaths.

I have had the honor of sitting with patients and families amid these final moments. Witnessing the bonds of loving relationships, knowing that peace has been made, and realizing that love endures, had lessened my fears about dying. But the tide changed several summers ago when my own mortality came into clear focus.

I had a strange, soft lump on the side of my neck, just below the clavicle. My doctor ordered an ultrasound of the neck to see if it was of suspicion. Unfortunately, the test showed a “spot” on my lung. Now it was my turn to wear that brave smile. My doctor’s plan was a simple one. Start a Z-pack that day on case the spot is a simple infection from my frequent bouts of bronchitis and re-run the Ultrasound in three months. If the spot is still there at that time, or larger, then a biopsy will be done. Until then … we wait. And we wonder. The waiting and not knowing was weighing heavily on me and my then-girlfriend (now wife). We tried to be brave and positive for each other. But I knew that I would not do chemo or radiation if the diagnosis was cancer. And I shared my choices with Cindy. Although that was difficult for her to hear, I needed to share it and she needed to know it … just in case. We spent a long three months waiting for the next test which, per my insurance coverage, was to repeat the ultrasound.

For reasons that are no longer clear, we kept this news and vigil pretty much to ourselves. I guess we did it so as not to worry our family and friends needlessly. But looking back, we may have missed an opportunity to let those who love us (and whom we love) share a very emotional time with us. When the time finally came to have the second test, the ultrasound did not even include the region of the first “spot” as it was ordered! After at least six months since I had initially observed the lump, I was referred directly to the Oncology Surgery department. The visit was to discuss the outcome of an ordered PET/CT Scan and the options of wedge-resection biopsy or lobectomy and other treatments.

Fortunately, the PET/CT showed no lump, lesion or any signs of cancer. I was given another chance to make a difference or have an impact. Having this very personal experience – facing a possible terminal diagnosis – gave me a more empathic, compassionate approach to my nursing style and strengthened my personal relationships.

At Caring Choices, we can help you have these difficult conversations, even during emotionally challenging times.

What is “Advance Care Planning” and why is it important for me and my family?

When most people think of advance care planning, thoughts of Living Wills and Powers of Attorney likely come to mind; along with the thought that the production of these documents need not happen until one is in their 60s or older.

Caring Choices does not discount the fact that writing down healthcare choices is important. However, we are interested in beginning caring conversations with people much earlier in their lives, when they are younger (but at least 18) and in good health. This story about Cindy’s experience with her Dad’s final hours may help illustrate the point that it’s never too early to have caring conversations with people you love — it may ease the burden of decision-making in difficult situations.

“When I was 30 years old, my Dad had a heart attack on the eve of Mom’s birthday (he was only 66). Four days later, he had a second attack that sent him via helicopter from one rural hospital to a larger hospital for emergency procedures in an attempt to get his heart pumping and blood flowing again. While my Mom, my brother and I sat in the cardiac surgery waiting room, the lead cardiologist sat with us and asked if Dad was an organ donor. He followed that statement with “We have a limited window to make a decision about harvesting any viable organs.” Looking back, I know that he had a job to do; but in that moment 20 years ago, learning that Dad was not going to make it was the most devastating news I’d ever had to absorb. Trying to come to an important decision in the midst of tears and emotional upheaval was challenging, to say the least.

As a family, we had never had conversations that answered the “what if” questions that so often occur when a medical crisis or traumatic event occurs. The only option we had that day in making a heart-wrenching decision was to examine how Dad lived his life — always in service to others, lending a helping hand or a kind word, and with a faith that his physical body would not be needed in whatever lay beyond death. Because we understood Dad’s values and beliefs, we were able to make a family decision in an emotionally raw setting to allow his organs to be used in service to others.

The fact that we had to “guess” at what choice(s) Dad might have made got Mom thinking. A few weeks after Dad’s funeral, she told me that she did not want my brother and me to struggle with such complex decisions in caring for her as she aged. We began talking about the kind of care she would want (and would NOT want) as her lung condition (COPD) worsened. Mom also talked about other medical maladies that “could” happen and she shared the kinds of things she would consider “worse than death”. She wrote everything down in the necessary legal documents. But, more importantly, we talked with her pulmonary doctor together and helped him understand the kind of care that was important to Mom.

When Mom’s health declined (not quite five years after Dad died), I knew what she wanted and I could more comfortably and confidently advocate for her choices to be honored. While it was still hard to say goodbye to Mom, I knew that her path was of her own choosing and that knowledge eliminated any burden or guilt I may have otherwise felt in making treatment and care decisions on her behalf.”

If you would like to begin your family conversation, please contact us at Caring Choices. We will be honored to help you take the first steps in what may eventually become your most loving final acts for those you love.

Who Will Speak for YOU?

As children, we relied on our parents for guidance, encouragement and direction. We also depended on them to make decisions for us – what clothes we would wear, what food we ate, what schools or religious organizations we attended, etc. Hopefully, our parents made those decisions with our best interests in mind to ensure smooth transitions through the childhood life stages. For most of our young childhood, our parents spoke for us.

As we aged through adolescence and young adulthood, we began to stretch our boundaries and flex our independent decision-making muscles. We learned to speak for ourselves and make choices based on our values, beliefs, likes/dislikes. We chose our friends; we determined our hobbies; we made meaning of our lives. And we grew into adulthood, we continued to make our own choices about careers, relationships, and our futures. Sometimes we made good choices; other times, not so good. But they were ours to make and we lived through whatever consequences followed.

We Americans pride ourselves on having and making our own choices. Some of us do diligent research and weigh every option before making a decision. Others make decisions based on how things make us feel or even on we expect others will feel. Regardless of what methods we use to make our decisions, the point is that they are still OUR decisions, OUR choices.

Why, then, are so many of us hesitant to continue on the path of making our own choices for future healthcare treatment? Is it because we are afraid to confront the fact that we will die someday? Is it because we assume that talking about our future death will upset those we love? Or, is it that we consider ourselves too young or too healthy to have to worry about this now? Whatever our reasons for NOT having these conversations and writing down our decisions, there is one very important decision we should ALL make – sooner rather than later:

“Who will speak for me?”

In the Commonwealth of Pennsylvania, there is a hierarchy of surrogate decision-makers that hospitals and healthcare professionals will follow if you are unable to communicate. That hierarchy, followed in particular order is:

1. Spouse (unless a divorce action has been filed)
2. Parents
3. Adult Children
4. Siblings
5. Friends
6. Healthcare professional (not optimal)

Honestly, many people may be comfortable with this decision-making hierarchy and feel confident that their loved one(s) will make decisions as if they were making them for themselves. And sometimes, loved ones make decisions based on how they would feel in the same situation rather than how you, as the patient, feel. There are many complexities in these decisions and there are as many important considerations to be discussed and vetted. Below are a few examples:

• Will your loved one really be able to make decisions that you would make for yourself? If you do not want tube feedings under any circumstances, would your loved one be able to abide by your wish? Many of us equate food with love – preparing and providing food for our loved ones is seen as a nurturing, loving gesture. But, few people understand that tube feeding at the end of life may actually harm a dying individual.

• If you say “do everything to keep me alive”, would your loved one understand that you actually mean do everything only if you still know who you are and who your loved ones are?

Who will represent YOUR choices when you are unable to communicate? Who will really speak for you?

Caring Choices can help you consider who your most effective surrogate decision maker will be. Contact us now to schedule your conversation.

“Viable”

Throughout my life there have been decisions made for me, about me, and by me with that one simple word in mind. In fact, a few months into my nursing education more than 20 years ago the word “viable” came into my vocabulary with regular frequency.

Webster defines viable as “capable of living”. But who defines capability in that definition?

Throughout my nursing career, “viable” has taken on a multitude of professional and personal meanings which have affected me differently depending on my role (CNA, LPN, RN). The myriad nursing fields in which I’ve worked have given me as many perspectives: geriatrics, psychiatrics, rehabilitation units, operating rooms, pediatrics, urology clinics, labor and delivery, home care and hospice. I have cared for patients of all ages, from newborns to octogenarians. In each and every one of these areas of my nursing career, the term “viable” demanded a different set of parameters in regard to my patients’ varied understandings of life and death … and mine. What may seem viable to one person, may not be to another. Capability to live may have as many variations. The point is that we may each choose to define viability and capability in very different ways.

There is much discussion today about viable conditions, futile treatments, and quality of life. I have often been asked by patients or their families about viability or futility of care and quality of life. Looking back, there is only one great regret than I now recognize occurred much too often. Those were the moments when patients and/or family members asked me to share what I have seen in others of similar situations. Granted, there are restrictions placed on healthcare professionals that prevent us from sharing certain information with people not authorized to receive such information. But, hindsight being what it is, I can see that there were times when patients and/or family members may have benefitted from me sharing knowledge and experiences gained over the years. Perhaps the patient’s (or family’s) struggle may have been eased if I had shared my wisdom in some measured way.

I do know, however, that there were many moments that my experiences helped patients and their families: helping patients understand the “what ifs” that were likely on their health horizon; alerting family members to the impending health changes of their loved one; and, honestly responding to a patient’s question of “what have you seen other patients like me experience.” In my career, I have seen patients and families who want to know everything, and others who don’t want to talk about death. And that’s okay. Everyone should have the opportunity to talk if and when they want to share.

And everyone should have the opportunity to decide for themselves whether they are “capable of living”, whether their treatment course is a viable one, and when quality of life becomes more important than the number of days, weeks, months, or years remaining.

We are Planners

Advance care planning has received a bad rap in the last 5 years. In 2009, certain elected officials criticized the healthcare reform bill for including voluntary planning conversations with physicians. They used inflammatory phrases: “death panels” or “rationing care”. Unfortunately, the real losers (in the fallout from those false and misleading phrases) are individuals who receive unwanted medical treatment and procedures because they have not had conversations with their doctors or their loved ones.

Of course, no one can predict when a trauma or medical crisis will occur in our lives. But that is the absolute point in having (and documenting) conversations early and regularly about our options and choices.

We are so good at planning for the “what ifs” in other areas of our lives. Some people plan for the possibility of car problems by carrying jumper cables, flares, and a spare tire. Others plan for the possibility that we might experience weather-related power outages — so we prepare our homes with back-up generators and keep candles/flashlights within easy reach. We also plan for joyous occasions like weddings, holiday celebrations, and even adopting pets. Many plan for a baby’s arrival by painting the nursery, assembling furniture, and reading books to arm ourselves with remedies for everything that “might” occur during the pregnancy.

We plan for things that will occur AFTER our deaths. We plan for our funerals; we purchase caskets and burial plots years ahead of time. And some of us plan for our families’ financial security through life insurance policies to cover the mortgage or other bills. We also prepare Wills to distribute our property and money to our loved ones or charities. We are planners in all areas of life and after our death … but we do not make plans for how we die. Obviously, no one knows when their “time” will come. But when it does, what will be our plan?

There are many purposes in planning in general, but specifically for our health care choices, these are key considerations:

To examine all possible angles and options (the “what ifs”)
To learn about and coordinate resources (who can help; how can they help)
To prepare a plan of action (if this happens, then do this)
To prepare for missteps or changes in the plan (if Plan A fails, move to Plan B)

Many research articles support having these most important planning conversations with our family, friends, spiritual advisors, and healthcare providers. We need to consider all the angles/options (risks and benefits), coordinate resources, and prepare our loved ones for Plan A, B and C. Most importantly, we need to acknowledge that each of us will die although we don’t know when or where. Fortunately, most of us have the ability to make decisions and choices about how we die. Whether that means in our own beds with our family and friends around us, or in a hospital ICU tethered to every piece of medical technology available – each person has the right to make his/her choices and have them honored.

Caring Choices can help you start this important planning. Contact us now to schedule your conversation.