Category Archives: News/Commentary

Life at All Costs?

The Marlise Munoz case reinforces my belief that everyone has the right to determine what kinds of health care treatment they want and do not want when faced with medical crises. And, most importantly, that everyone consider writing down their wishes with as many details and scenarios as possible … and then share those wishes with everyone, from family members to friends to spiritual advisers to lawyers to doctors and other healthcare providers. Obviously, no one can contemplate everything that could possibly happen to render oneself unable to communicate or make decisions to accept or refuse medical intervention. But to contemplate nothing may bring about situations where no one has control over decisions.

When stories like Mrs. Munoz’s are traipsed across the nation via our sensationalizing media for every Tom, Dick and Harriet to offer an opinion, I wonder if those offering an opinion also take the time to examine how they would want to be cared for. Maybe their opinions indicate the kind of care they would want. It may be too late to make decisions if we wait until we are faced with the situation first-hand.

So, rather than get caught up in the very opinionated debate swirling around these kinds of cases, I would hope that each individual starts thinking about their decisions if faced with a “brain dead” situation. These are some questions I have thought about for myself:

Would I want to be connected to machines that would breathe for me and pump blood through my body even though I don’t consider that “living”? What if the life-support was determined to be needed only short-term (like after a car accident) with full recovery expected?
Does everyone in my circle understand my thoughts about brain death and how I would want decisions made if I am declared brain dead?
If I was connected to life support, would I want my family forced to make the decision to disconnect or would I rather give them specific, written instructions to carry out my decisions?
In my decision-making process, can I anticipate or understand the emotional turmoil of my family keeping vigil over me in a mechanized state?
How much decision-making heartache will be avoided if I write things down and talk about it with my loved ones and my doctors?
Would my deliberations include consideration of the possibility that a long-term existence on life support might financially bankrupt my family?
Would I expect my family to be embroiled in a legal/court battle to remove life support that was initiated against my wishes?

People often make vague statements like “I don’t want to be a ‘vegetable’” or “Pull the plug” or “Do everything” without any explanation of specific situations or steps for loved ones to take on their behalf. Statements like that are really of no use to people standing around the bed of a dying (brain dead?) loved one. Only with frequent conversations and written decisions will family members be able to advocate for your care if you are unable to do so for yourself. Imagine the anguish and expense that might have been avoided for the Munoz family if only their conversations would have been shared with others and written down. Hopefully the fact that Mr. and Mrs. Munoz, who are in their early 30s, will emphasize that advance care planning is important for everyone, not just for the elderly (which seems to be a common thought).

Caring Choices is ready to meet with all of the generations of your family to help you navigate these conversations and put health care decisions in writing.

Hearts vs. Brains

As I write this post, there is debate swirling around 13-year-old Jahi McMath in a children’s hospital in California. She has been declared brain dead following complications from a “routine” tonsillectomy. The hospital’s position is that she should be removed from the ventilator that is currently breathing for her and allowed to exit this life peacefully. Her parents by all accounts are “expecting a miracle” even though all of the medical professionals and a judge have declared Jahi brain dead. Jahi’s mother has been quoted as saying if her daughter’s heart would stop, then they would consider her dead; since her heart is still beating, they consider her still alive. The gist as I understand it is that the parents have requested that the hospital perform two surgeries: a tracheostomy and a feeding tube placement so that Jahi’s body can be kept alive and moved to a nursing facility. The hospital is refusing to perform surgical procedures “on a corpse” and hold the position that brain dead means permanently lifeless with no recoverable options.

In this situation, we can clearly see struggles between hearts and brains. Not necessarily the physiological structures and functions of these two organs, but rather the characteristics assigned by human beings to their relevance in our lives. If one’s perspective is heart-based (emotions) like family members, one may assume that life remains or is paramount and, like Jahi’s parents, might hold out hope for a miracle. If perspective shifts to a brain’s reasoning and logic, one might agree with the hospital caring for Jahi and avoid doing further harm to a brain-dead little girl.

Regardless of which side one agrees with, there can be no overlooking the fact that emotions (heart) and reason/logic (brain) rarely operate in unison in times of medical crisis. Loved ones unprepared for a medical crisis will most often voice concerns or directives from the emotional arena while professional care providers are likely to be working from the reason/logic arena. Although families do not want to hear words like “medically futile”, they may nonetheless need to be said in the spirit of shared, informed decision-making. Healthcare providers have an obligation to provide care but that obligation ceases when the options for care are deemed to offer no medical benefit for the patient.

Several important lessons may come from Jahi’s case:

Surgical procedures, even if very commonly performed, should never be considered routine.
Patients and families should fully understand and prepare for possible complications regardless of the percentage of risk.
It is never too early to have conversations about scenarios like this with family members, including children.
We need to employ both hearts and brains in determining healthcare choices and treatment options, long before medical crises occur.

Caring Choices is ready to help you and your family prepare for decision-making during a medical crisis. The key is early conversations in times of health when emotions and reason are both fully engaged.

“Routine” is Subjective

I recently underwent a routine, preventative medical procedure. Now that I am on the other side of it (and there were no problems found), I can breathe easier, I can think more clearly, and my mind is not occluded with worry. That was not my perceived reality during the week leading up to this experience. I thought several times of cancelling the whole thing. I agonized often about the preparation and whether I could do it. More often than not, the notions of complications seeped into my thoughts.

One important lesson I learned during this experience is that “routine” is subjective. While very common, this would be a “first” for me and felt anything BUT routine. It is an invasive procedure and although the doctor shared that there is minimal risk, my own research (perhaps way too much of my own research) alluded to severe complications if those minimal risks occur. Even the well-intentioned support of friends who have gone through the same process was of little comfort when contemplating the things that could happen … to ME!

As I have reflected on my experience, I have come to realize that all of the energy I expended on worrying and anticipating robbed me of a week’s worth of enjoying life. My preoccupation with “what-ifs” kept me from fully enjoying time with my husband and friends, interrupted restful sleep, and disturbed my mood. Everything my concerned friends and family shared about their experiences turned out to be pretty accurate. The day before really was the hard part, and it wasn’t all that difficult or unpleasant. I slept through the exam and awoke without complications.

I believe it is natural and normal to worry about the unknown, to anticipate some first experiences with trepidation and fear, especially when the experience involves something invasive into or against our bodies. Part of my fear leading up to this day was worrying about what would happen to my family should a complication occur that would render me physically dependent, or unable to work and contribute to our household. I became fearful about what my son would experience if something happened to me. As I told my husband, all my thinking and worrying was taking me deeper into the rabbit hole and I could not keep myself from sinking into it.

Through my experience, I have come to understand a few things more clearly:

People are hesitant to talk about “what ifs” with medical procedures and diagnoses for fear the bad things may actually happen.
Thinking and talking about things that might happen in the future can be daunting and anxiety-provoking.
Without accurate information and open discussion, it becomes very easy to dive into the dark recesses of imagined (and feared) problems.
Even with kind reassurances and information, people experience fear, worry and anxiety when an experience is new.
Worry and trepidation cause a fretting state that chokes out the ability to spend quality time with those we love and/or enjoy favorite activities.

Talking about bad things does not make them occur. Open, engaging discussions might actually alleviate some of the worry that builds up when things are left unspoken. Although hearing from friends and relatives who had undergone what I was facing did not completely ease my angst, it did give me hope that I, too, would come out of it fine. But, if something bad did happen, I knew that I would be surrounded by love and support. Sometimes, just knowing that people have your back can weaken the fear of the unknown.

Caring Choices can help you and your family navigate the rabbit hole of fear, worry and trepidation by providing information and guiding support as you step through your personal care planning conversations.

Just the Facts Ma’am

This past week I took one of those social media quizzes to determine whether I’m left-brained or right-brained. The results indicated that I’m 2/3 left and 1/3 right – no surprise to me or those who know me well. While I appreciate art and music and all things “creative”, I am a creature of reason and preparation. I like facts. I like statistics. I analyze things from several angles to be sure that I’m considering all the options. Of course, my admiration of facts, statistics and details has certainly not prevented me from making bad decisions on occasion. In addition to my love of facts, I am also an emotional being. Through hindsight, I have realized that my bad decisions were almost always made during times of emotional extremes – when I was feeling euphoric over a new relationship or experiencing the death of someone I loved. I have learned that making decisions based solely on my emotional state rarely produced a good outcome.

One of today’s NYTimes’ opinion pieces discussed some reasons that people make bad decisions. Two points in this piece resonated with the literature review I had done in my graduate work on palliative care. The author suggests that (1) people do not like to, and therefore will not, challenge those whom they believe to be authorities (e.g., doctors, financial advisors, lawyers) and (2) intense emotions, especially anxiety, stress and fear, interfere with our decision-making capacity.

The author also noted that our own optimism is a culprit in bad decision making. In a nutshell, we tend to ignore “bad news” we might receive and instead focus only on the “good news.” We look for that one in a million case that ‘proves’ we have a shot too. Someone has to win the Powerball eventually, right? (The odds of winning the Powerball are 1 in 175 million yet how many of us still buy that single ticket?) Likewise, someone could be the medical miracle – why not me or my loved one?

An elderly man once told me that he never expected to become totally dependent on his family. He required help with feeding and bathing and dressing and walking. He needed help with everything that he had been doing for himself just a few weeks before. He had lived with heart disease for nearly 30 years before receiving a cancer diagnosis. His treatments impacted his ability to function without his family’s assistance and he most recently suffered a stroke which took not only his remaining (albeit limited) ability to function, but it stole his independence. Even with all of these medical conditions and the complications they bring, he never considered the fact that he might become totally dependent. He remained optimistic that he would manage his conditions and die peacefully in his sleep one night.

The facts are that nearly 50% of American adults live with a progressive chronic illness. One- quarter of elderly adults (over 60) is living with two or more chronic illnesses (called co-morbidity in the healthcare arena). As science and technology allow us to live longer, these chronic conditions will require us to examine more facts and consider all options. Most Americans (nearly 90%), when asked, say they want to die in their homes and be cared for by loved ones. Many Americans, like the man above, expect to die peacefully in their sleep. The reality is very different. During my graduate literature reviews on end-of-life care, I came across these facts:

Most of us will die after experiencing a chronic, progressive and ultimately fatal illness.
Approximately 80% of deaths will occur under the care of health professionals in some type of healthcare setting (hospital, nursing home, hospice unit).
When the time comes to make important end-of-life decisions, approximately 50% of people are incapable of participating in those decisions.
When health professionals are uncertain about what decisions to make, the default is to treat [whether you want treatment or not].
If health professionals and loved ones have not spoken with a patient about end-of-life issues, they cannot reliably predict what the patient would have chosen and they find the decision making responsibility burdensome and stressful.

Talking about our fears, examining facts and risks, and sharing hope are equally important pieces of the healthcare conversations that we all need to have. We may also need to adjust our expectations. These conversations will be difficult. They will be emotional. The process may, at times, be intensely sad. But, it can also be liberating for those who want to talk about their illness and share their decisions with loved ones. It can provide opportunities for families and friends to share what’s most important to them. Examining all the facts (good and bad), through tempered optimism, can alleviate bad decision-making and decrease the feelings of guilt and burden that so often occur when decisions are made for you, by others, in states of anxiety, stress and fear.

Caring Choices can help you work through the anxiety, stress and fear to examine all the facts and make decisions that will be good for you and for those who love you.