Category Archives: News/Commentary

Uncomfortable

I consider conversation between people to be one of the most rewarding and exciting aspects of life. Recordings of the written word comes in second in my humble opinion due to the fact that what is written is subject to misinterpretation depending on many factors. Not to negate the misunderstanding caused by language barrier and incoherent speech patterns, but generally when you hear something it is pretty much just “what you heard.”

At no other time in history have I been more aware that there is such a massive amount of uncomfortable conversations occurring. Sadly, much of the most offensive exchange we are currently exposed to is not verbal but texted, posted, printed, or pre-recorded. The convenience of these methods of information exchange is undeniable. The quality is questionable.

The volume of discourse over the current political landscape is beyond comprehension, not only in America, but across the globe. The shifting sands of opinion and time will eventually settle, and new dialogue will resurface about whatever balance human existence regains.

Having witnessed these tumultuous events, and recognizing the multitude of newly vehement revelers of political opinion which had never, before now, given the topic much consideration, I began to wonder: Why? Why now? Have there not been millions of debatable issues over the past 40 years that failed to become more than a C-Spanned, red-eyed, remote flip of boredom? Certainly we have all been affected by this shuffling of interests in world affairs both public and private. But in the past many of those personally involved were understandably limited to the professions directly designed to be appropriating the need. This political slugfest seems to have engaged everyone, from every perspective and every varied opinion into an extremely uncomfortable national discourse.

Yet when attempts are made to encourage everyone to become involved with their own end of life issues, the resistance is equally universal. Very few people seem to want to begin discussions with a loved one; that is until an acute trauma or terminal diagnosis is ripping the lives of their family, friends, and acquaintances apart. As is common within proper social etiquette, there is a general outpouring of prayer, shared grief, and unified offers of support.

What will it take to make this “uncomfortable” conversation as popular as the raging debates around the world today over truth, rights, and political control? It is every bit an undeniable fact that we have a new President as it is that everyone will eventually die. Life goes on, and ends; the disproportionate lack of acknowledgement of death will not change the fact that it will occur for all of us.

What can help make conversations about death more comfortable? I believe it is honest, compassionate examination and understanding of the emotional, physical, and psychological needs of each other coupled with genuine, meaningful communication before a medical crisis occurs. Enough can never be said to help each other with what is often the most frightening, “uncomfortable” event we all will ever (and must) face.

The outcome of these “uncomfortable” discussions may even be peace of mind, increased knowledge of legal and financial responsibility, understanding of desired preferences for services and care due to changed independence, emotional release, insight into unanswered concerns, repaired personal conflicts and family dynamics, expression of personal choice, acceptance of everyone’s opinion, etc. You will never know if you don’t ask.
Just start talking!

Priceless Care

Medicare recently announced that it would implement paying physicians for taking the time to have advance care planning conversations with their patients beginning in January 2016. This could have happened in 2009 but certain politicos and pundits warped the intention of this into “death panels” which knocked these important conversations off the table. Now that Medicare will reimburse physicians to have these conversations, I can’t help but wonder about the metrics and outcomes measurements that will also be implemented to track the occurrences of these conversations, as well as their efficacy.

It seems like a step in the right direction to reimburse physicians for the time they spend in these conversations with their patients. These conversations can provide important information for doctors, nurses, social workers, etc. about what their patients want as far as treatment, pain and symptom management, and end of life care. However, the majority of “care” that patients receive may not be provided by their doctor (oncologist, cardiologist, primary care doctor) or the nurses, social workers and psychologists who work inside the healthcare facility.

Medicare’s decision to reimburse physicians for their time may encourage more physicians to take the time to talk with their patients in more depth than time has so far allowed. Physicians and other healthcare providers certainly have a role in discussing risk vs. benefit of treatments, rates of survival, efficacy of drugs, places to receive care, etc. This reimbursement will probably not entice physicians already reluctant to talk about “care vs. cure”. It will not instill the comfort and confidence needed to have these kinds of conversations with patients in some physicians who have not found that comfort and confidence already in their approach.

A conversation in a healthcare setting is only a beginning of much needed consistent and continuing conversations to help a patient and his/her family through chronic illness management and decisions. Physician-led conversations will likely not be as frequent (or appropriate) in the midst of a medical crisis, accident or trauma. Conversations must occur long before these situations happen. There must be more to these conversations than medical considerations.

I continue to believe that the most important aspect of care conversations is the information shared among family and friends who will be the in-home caregivers providing the majority of care. Family and friends who will serve in the role of surrogate decision-maker when the patient is no longer able to make decisions or needs known will reap the benefit of these conversations. There are rare instances where financial reimbursement is available for the time family and friends will spend in caring for a loved one. But when care choices are discussed and prepared for, those experiences can be priceless.

Caring Choices knows that asking questions about values and beliefs can start deep, loving conversations. We created Elephant in the Room™ to help individuals and families begin these important conversations. Start with these three questions from Elephant in the Room™ and see where your conversations lead:

What gives your life purpose or meaning?
Where do you want to be cared for at the end of your life?
If you were suddenly unable to communicate, would your family know what kinds of care you want (or don’t want)?

When “Shoot First, Ask Questions Later” isn’t Effective

The answer seems kind of obvious, right? If you shoot first and it’s fatal, you won’t be able ask questions later. The idiom itself is extremely reactionary. My interpretation is that someone who shoots first and asks questions later is likely reacting to an intense fear of a perceived imposing, immediate threat. Certainly there may be circumstances in life when shooting first is the best option and I’ll let you, the reader, determine what they may be for yourself. Where I strongly believe “shooting first” is NOT the best option – actually, for me, it is never an option – is in making healthcare decisions.

While reading my digital New York Times this morning, I came across an article on dialysis later in life. Embedded in that article is a link to a comprehensive online resource which provides lists of five (or more) things that physicians and patients can use to spark conversation, to help inform of risks and benefits, and to make “right” decisions based on individual circumstances. The resource was created by the American Board of Internal Medicine Foundation (and their partners) and they aptly titled their initiative Choosing Wisely®. From the Choosing Wisely® website:

Choosing Wisely^® aims to promote conversations between providers and patients by helping patients choose care that is:

• Supported by evidence

• Not duplicative of other tests or procedures already received

• Free from harm

• Truly necessary

The advance care planning geek in me is ecstatic to have found this resource! I plan to download the entire collection of PDFs for use with Caring Choices clients. I encourage you to share this site with people you love and your healthcare team for better informed, shared decision making.

We need to be asking questions before “shooting” into tests, treatments and procedures. Asking questions first doesn’t mean that we won’t go ahead with a test, treatment, or procedure. But it does mean that we are making informed decisions based on valid information, examining our situation and our wishes; not simply proceeding because the test/treatment/procedure is available. Some basic questions to ask might be:

Is it necessary?
How will it help me?
How will it hurt me?
How will it impact my quality of life?
How much time do I have to make a decision?
What evidence does research provide about it?

Shooting first and asking questions later is a gut reaction. In healthcare options and decisions, we need to be consulting more than our gut. As individuals, we are the only one going through the physical act of a test, treatment or procedure. However, we are encumbering those we love with the emotional and psychological outcomes of the test, treatment and procedure. These outcomes may involve complex and complicated caregiving, especially in later years. It will be important to know the how-what-why-when-where of caregiving needs when making decisions. Get informed about tests, treatments and procedures. Then, choose wisely.

Caring Choices understands that time can be of the essence when needing to make healthcare decisions. We know that there are times when following our gut makes sense. We also know that sharing conversations about healthcare options and decisions provides a sense of security even if we don’t all agree on the course of action. Making your decisions known to your loved ones and healthcare team will prevent them from the reactionary shooting first and hoping to be able to ask questions later.

Struggle to Exist

In the never ending search for blog topics, I find myself listening, reading and talking with the hope that something I see or hear will stand out as an interesting point to try and share. This week Cindy suggested she had heard something in my music from a song entitled Traces Exist, which has inspired me to write about an idea that the line “struggle to exist” triggered.

We all face certain responsibilities in life that are actually mandated to us from laws beyond those of conscience, ethics and morals. We all must pay tax on income. We must purchase car insurance if we choose to obtain an active driver’s license. We are even asked to obtain health insurance with the prospect of being fined if we are caught without. What struck me today was that there seems to be no responsibility designated to anyone to have advanced care and end of life discussions, despite the growing concern for costs related to the care given during aggressive or prolonged end-of-life care. There are often no improved condition parameters or attainable goals set forth which govern the extent to which treatments for prolonged illness proceed. Hoping for more time when faced with the end of life appears to be the focus without regard for quality of life, cost considerations, or relief from symptoms. Is length of time really all that matters?

Perhaps the questions are too difficult to process, the answers to varied, complicated or vague to comprehend. Humanity simply survives. But more than once in my career I have heard people say “We treat our animals better.” There is no guarantee that treatments, procedures and new advancements in technology and medicine will ever eradicate the immediate needs of the person faced with the already weakening muscles, disrupted digestion, and pain-deprived sleep. The impact of the finality of death affects everyone involved. From physicians to families of the patients, all feel the pressure to apply the best state-of-the-art processes to prolong life and “beat” death. But we cannot ultimately win. And so we “struggle to exist” in a state of suspended hope that a miracle will occur and maybe this next pill, next surgery, or next infusion will be the one that wins the fight. And I do know that miracles can and do happen – sometimes.

Caring Choices also hopes for the miracles that relieve the struggling of those faced with declining health no matter what the cause: natural aging, disease, or trauma. The final outcome for all of us is going to be the same. How we prepare for this is not going to become “mandatory”. You will not be fined if you do not talk about death. You will not be bothered at all by anyone. You will likely never even be asked how you feel about your own death until the reality of it is in your face. And as we all age that face becomes more familiar, and it takes on the shape of our family, friends, coworkers, and neighbors. Sooner or later it will be in your mirror. What will you say to your reflection then? Will you be prepared? Will you have peace and comfort as your priority? Or, will you struggle to exist?

Don’t Wait

I recently resigned my part-time hospice social worker gig. It was bittersweet, but necessary. I’m not as young as I used to be (no kidding; who is?). I came to recognize the signs that working a full-time job, plus doing my best for hospice patients and their families in my “moonlighting” flex time job, was taking its toll in more than one way. I wasn’t sleeping well. My stress level was escalating. My focus was segmented in too many directions. I was missing much needed down time to rejuvenate and renew myself. I needed more free time for the “little” things: spending time with Jim, staying in touch with my son, playing with our cats, reading a good book on a snowy weekend afternoon, having meals with friends, etc.

But my heart will always be with hospice and fortunately (yes, fortunately) I can continue my hospice social work with residents and families in long term care. Hospice care is a blessing for many families. This PBS article helps explain why. Please take a few minutes to read it.

The gist of the article is the point of my blog. We’ve seen it all too often with our own family members, our patients and my residents & their families. Those of us who work in hospice hear it all the time: “I wish we’d started hospice sooner for Mom.” I have never heard anyone say “Dad was on hospice too long.” Part of the problem, I think, is that the word hospice still connotes “immediate death” for some people. The PBS article states: “People often wait too long before seeking hospice care. In the United States, the average length of hospice care is less than 60 days with 30 percent of those who elect hospice care dying in seven days or fewer.”

It’s difficult for some to embrace the hospice concept and so they wait to enroll their loved one. Or they wait to have a conversation with a healthcare provider about hospice (or the healthcare provider waits too long to initiate). When my Mom’s doctor told us – “There’s nothing more we can do. Your disease is end stage. It’s time for hospice.” – neither she nor I had ever heard of hospice. There has been much more about hospice in mainstream media since Mom died in 1998 (on her 7^th day of hospice care). I often say I wish we’d known about it sooner. And not just for my Mom’s sake, but for mine and that of my then-13-year-old son.

There was so much support that we did not have time to fully engage. Now I know that there was a social worker and a chaplain available to us for resource, emotional and spiritual support. There were volunteers who could have come into our house to sit with Mom while I took my son to his baseball games (instead of me leaving her alone and then sitting anxiously by my bag phone – it was 1998 – awaiting it’s ring telling me she needed help.) There were people who could help other family members come to terms with the situation. The nurses we met were great; the aides were invaluable to me since I was uncomfortable with bathing my Mom.

Let me stop there to drive home a point: I recognized that there was something I just could NOT bring myself to do. With hospice, there was someone I could call to help us. She didn’t mind that I couldn’t bathe her and she was grateful for the aide who could. And I wasn’t then (nor am I now) ashamed to admit that I could not do this one thing for my dying mother. I could empty/clean her bedside commode. I could clean up other bodily fluids that she would expel given her COPD. I could feed her, wash her clothes, reposition her in the bed, entertain her, listen to her, and spend time with her. But there are reasons that certain people are CNAs and others are social workers (or plumbers, or policemen, or truck drivers, etc.). Each job has demands that the other may not be comfortable doing. My mom knew I wasn’t able to bathe her because we talked about it before we knew her disease had become “end stage”. And I didn’t have any guilt about not bathing Mom because we’d talked about it and there were others who could help us with that.

And there’s the point. We talked. Even before the doctor’s proclamation that there was nothing more to be done, we had talked. We didn’t wait. We continued to talk throughout the next 9 nine days until the morning Mom died. And there was a lot more to be done. Our final conversation, just hours before her last breath, was about her funeral scriptures and songs. Until the very end, Mom wanted to be sure I knew what she wanted.

So, don’t wait. Start a conversation with people you love. It doesn’t have to be a lengthy discussion initially. Just ask your kids who would be comfortable giving you a bath in your last days. You’ll be amazed what conversations follow that!

Caring Choices understands that each of us is designed to do certain things more comfortably then others. Recognize your strengths and abilities and then lend them to care for someone you love. Don’t wait too long. Better yet, don’t wait at all. Talk. Share. Love.

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.

Informed, Not Terrified

This past week, I read an article in The New York Times about women and heart attacks. Amid all the information about the differences between women and men with heart attack symptoms, survival rates, and treatments, one particular line stood out to me: “It’s good to be informed, not terrified.” And I thought, what a great statement! This line has a place in the work that Caring Choices is doing.

When we talk to people about having personal conversations and making healthcare choices with their family and friends, many have that deer-in-the-headlights look. They’re terrified to start these conversations for a variety of reasons:

Some fear that somehow just talking about death will bring it about.
Many are afraid their loved ones will become irreparably sad or depressed.
Several “just don’t want to go there.”
Others are concerned that too much information will make them fret and worry, and take away their focus on just living/enjoying their lives.

Since no one has a crystal ball to help us anticipate which disease(s) will befall us or to know when a trauma/accident will occur, it behooves us to begin thinking now about the “what if” scenarios that accompany illness, accidents and simply getting older. Not that we can consider EVERY possible outcome of aging, disease, or crisis; but having information about disease trajectories of which we may be at higher risk, or the common maladies of advanced age, need not terrify us.

Nearly every day, I encounter an elder person who says:

“I didn’t expect to live this long/be in a nursing home.”
“I don’t want to be a burden to my family.”

Or, I encounter a family member (usually an adult child) who says:

“I just can’t take care of Mom at home anymore.”
“I wish I knew what Dad wanted us to do.”

These comments illustrate the importance of having conversations before we reach ripe old ages, before chronic diseases reach end-stage, and before a trauma occurs. Having information does not provoke the occurrence of health problems. Sharing information does not necessarily produce sadness, depression or fear. But we’ve seen that NOT having conversations and making decisions does promote chaos, guilt, fear, confusion and, sometimes, dissension. Which scenario would you like your family to be in when you reach your end-of-life stage: informed, cooperative, emotionally-supportive advocates or uninformed, quarrelsome, emotionally-conflicted adversaries?

Caring Choices endorses having all the information you need to make decisions and have conversations without being terrified. Sometimes that means you and your family need someone who can help you begin the conversation and mediate stalling factors. We can help. You can talk about this.

86 – 96 – 90 – 88 – 82 – 96 – 91 – 44 – 82 – 70

One of these things is not like the others…ah, sweet memories of Sesame Street lessons about differences.

Well, these aren’t winning lottery numbers or a quarterback’s top secret audibles.

These numbers represent the spectrum of ages of community members who have died over the last few days and whose lives are represented by obituaries in today’s newspaper.

At first glance, some might consider the “44” to be the one that is not like the others. This perspective might be based solely on age or on the amount of life yet to live. But does that discount the experiences already attained by age 44?

Another perspective may be that the “96” is the outlier. A person who has lived a “full” life and may have been “ready to die”. Then again, maybe she wasn’t ready to die. Perhaps she felt she had more to do or say?

You really can’t judge the quality of life based on the quantity of it. After all, people are more than the sum of their years, right?

Of these 10 individuals, five died in a hospital. Five died in a skilled nursing facility. One, according to the obituary, was “surrounded by family” at the time of her passing. One was the “last of her family.” One notes she is survived by a “special friend and caregiver.”

All of them (except the one who is the last of her family) are survived by brothers, sisters, sons, daughters, husband, wives, in-laws, nieces, nephews, grandchildren and/or great-grandchildren. Some are now following loved ones who died before them.

A healthcare worker. A farmer. A seamstress. A retail store clerk. A secretary. A supervisor. A homemaker. A Wesleyan. A Catholic. A Methodist. Two Lutherans. A Presbyterian. A member of the Church of Christ. One made Barbie doll clothes. Two worked at SUNCOM. Square dancing. Embroidery. Crocheting. Ceramics and needlework. Auxiliary member. Grange member. Gardening. Devote to family. Devoted to children. Loved her pet cats.

They or their families encourage donations in their memory to a spectrum of beneficiaries: Church. Cancer Society. Library. Education Foundation. SPCA. Hospice. Park Fund.

Given these wide ranging descriptors, each of them could be the “one not like the others.” Age doesn’t define us. The cause or place of our death doesn’t define us. What DOES define us are the values and decisions by which we live our lives until the final tally becomes a column in the local newspaper. What will the world learn about you when your obituary is printed?

Caring Choices understands that each person at some point is “not like the others.” Individuality, personal values and beliefs, and fear of the unknown can greatly influence our end-of-life decisions. The decisions we make will have lasting impact on those whom we are “survived by.”

The Randomness of Life

A woman’s life hangs in the balance, the result of the random act of a rock being thrown from an overpass. A young American doctor contracts the Ebola virus while working to save Liberian victims of the same disease. Terry Schiavo. Nancy Cruzan. Karen Ann Quinlan. Jahi McMath.

Random acts (whether of violence, accidents, or health crises) occur with lightning speed across our world with differing outcomes: some people live, some die; others are in limbo in between life and death – fighting, struggling, coping, surviving.

Obviously, we can’t know when these random events will occur or to whom they will happen. We could all let imaginations run wild contemplating the random events we might encounter. That would likely drive us all a bit mad.

But when I read about people like those in the opening paragraph, I can’t help but see the opportunity for each of us to wonder what we would do if it were happening to us or someone we loved. And not just wonder … but have real, honest, heart-and-soul-searching discussions with those we love. Loved ones are more-often-than-not put in the position of making healthcare decisions on behalf of a loved one who cannot speak for herself/himself.

It is hard to imagine what one would do in countless situations. Contemplating our own death can stir emotions we’d rather let unexplored. But saving our loved ones from having to make heart-wrenching life-or-death decisions can be our last loving act regardless of which random event put us in that situation.

We lift up positive thoughts and healing prayers for those who are victims of random acts and for their families who are forced to face decisions they’d rather not.

Caring Choices hopes individuals and families will contemplate the randomness of life and begin conversations. Making decisions while you are healthy may not seem appealing to many. Perhaps saving your loved ones from agonizing, fast-paced decision-making in times of a medical crisis may offer some motivation to start discussions.

What are the Odds?

As I sat at the computer checking our luck on the most recent Powerball drawing (we didn’t win … again), I wondered about the odds of actually winning. According to the PA Lottery website, the odds of winning ANY Powerball prize are about 1:32. The odds of winning the Powerball jackpot (multi-millions of dollars) are 1: 175,223,510. Not very good odds of winning either way you look at those numbers. But it is fun to play once in a while. And there’s that saying: “You can’t win if you don’t play.” Of course, there’s no real loss in playing the lottery if you’re spending (and can afford to lose) a few dollars a week. It’s when the stakes are higher that the loss can be devastating.

Earlier today, I read an article in The New York Times about a long-term acute care hospital serving patients in Connecticut who seem to have wagered bets in a kind of healthcare lottery. Whether they have won or lost is something only they and their families can determine.

There are several statements/quotes in that article that struck me as key to helping people be knowledgeable, contemplative and responsible healthcare consumers. I’ve underlined words that really stand out to me:

Long-term acute care is “where you go when you survive but you don’t recover,” Dr. Nelson said.
Deciding to have a tracheotomy should be a difficult decision for family members, she added. But, she said, “people misunderstand — they think it is a sign of hope.” Few doctors discuss the likely consequences or the alternatives.
But the likeliest reason for the disconnect, he said, is that families are initially dealing with I.C.U. physicians who are focused simply on keeping the patient alive: “They are discussing how the patient is doing today, not how they will be doing in six months,” he said.
“People are not prepared,” Dr. Nelson said. “There is one intervention after another. Ventilator, feeding tube, permanent feeding tube, permanent intravenous access. ‘Should we treat this infection?’”

The patients and their families in the NYT article faced difficult decisions. The choices made them dependent on ventilators (or other permanent medical technologies) that now require 24/7 acute care in hospitals which may be states away from where their loved ones live and work. Whether these decisions were the ‘right’ ones or not is not for this writer to decide. What I hope the sharing of this article accomplishes is getting people to have serious, thoughtful conversations about the types, benefits and risks of healthcare choices long before a medical crisis or traumatic accident occurs.

Just like playing the lottery, odds of “winning” in serious medical situations narrow as the jackpot gets higher. Factors that impact the odds include our age, our physical health going into the crisis, and the scope and severity of the crisis itself. When a person doesn’t win in the health care lottery, s/he isn’t simply out a few dollars. And s/he isn’t the only one who loses. The loss of time is immeasurable; the loss of independence is irreplaceable; and the loss of this magnitude does not easily provide endless chances to “play” over and over again.

Caring Choices believes that healthcare discussions and choices should not be a gamble. Educate yourself about your medical condition(s) and available treatments, and benefits & risks, including short-term and long-term outcomes.