Monthly Archives: June 2014

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.

When Nature Calls

Occasionally for people, there are triggers that have the ability to remove us from the moment and launch us into the past memories of days gone by. For some it can be certain fragrances on the soft breeze, or melodies from an old song that resonate immediate emotions and thoughts.

For me recently it was the process of clearing out a room for new construction. The pictures we found and old keepsakes dusty and forgotten, the faint trance of Old Spice when opening an old jewelry box. In a heartbeat I was once more in my youth, riding the waves of feelings in a series of alternating slow motion and fast forward reflections. A Kaleidoscopic transformation from joy to sadness and back again, leaving me with the recollection of how precious the moments are that I have so often taken for granted. The situations I have wished away, the relationships I have ignored, the goals that have slipped into the shadows of time. I recalled how so many times it seemed that the only relief I had most often turned out to be when I isolated myself in nature.

I often found myself walking through the woods, sitting alongside a stream, wading across the shallow current to an island of refuge from stress. Often just looking through a window in a house or car, just a glimpse of green leaves could somehow ease the strain. And nature never judged. It never refused, was never too busy, tired or not at home. The streets offered an escape to peace; the darkness felt safe. The healing of my soul had begun without me even being aware that it was taking place. Nature was doing its job, and despite how severe and harsh its realities can be, it also has held a salvation from anguish and pain for me over the years.

Of all the memories of hope and joyful times, it has been in places like Kauai’s Na Pali coast line, Havasu Creek’s Mooney Falls, the Susquehanna River banks and trails around Sedona Arizona where some of the most important healing has taken place for me. Not in an office, group or classroom. And there, alone in nature, was where I was able to process and evaluate all of the intentional and random words, actions and meanings of life around me.

Caring Choices understands how difficult it can be to engage in conversations about the eventual changes with which the natural process of life challenges us. Our “Elephant in the Room™” is specifically designed to break this silence. Alone, as a couple, or in a group, we have provided various scenarios and considerations to hopefully aide you in finding the path you seek to whatever peaceful place you hope to reach When Nature Calls.

That’s All You Need

A healthcare professional recently remarked that an advance directive is “all you need” for your family to make decisions on your behalf … but that couldn’t be farther from reality.

Typical advance directives (most people know them as a Living Will) consist of a list of 5-7 undefined items to which a person chooses “I do want” or “I do not want” responses. These simple “choices” are designed to help loved ones and healthcare providers know what kind of care and treatment one might want in a multitude of illnesses and medical crises.

Is it any wonder that people don’t want to have these difficult conversations when healthcare professionals themselves believe that a piece of paper is all you need?

I’ve said before that the documents (Power of Attorney for financial and healthcare decisions, Living Wills, Guardianship, etc.) are important legal documents to produce when speaking on behalf of someone who can no longer communicate or make their own decisions. However, the documents are not enough. Not even close to enough.

The most important thing we can each do to help our loved ones and healthcare professionals provide care and treatment that we desire is to consider possible healthcare scenarios that we may face, have conversations, make our decisions, and then talk – talk – talk some more.

Talk ‘til the cows come home.
Talk ‘til we’re blue in the face.
Chew the fat.
Talk it through.
Talk turkey.
Have a bull session.
Shoot the breeze.
Spill the beans.

There’s no one way to talk. It really depends on your style, your family dynamics, comfort zones, and the support/encouragement available.

And while we’re all talking, we need to educate our healthcare providers. We need to tell them that it’s okay to bring up the subject of end-of-life planning. In many cases, people WANT their healthcare providers to be the ones to initiate these conversations. Healthcare providers have experience in many situations and can provide concrete information when patients/families ask important questions.

Caring Choices can help anyone learn how to talk about these important decisions and also how to share decisions with people you love. Conversations, decisions and documents – THAT’s all you need.

Elephant in the Room

Caring Choices was conceived as an avenue for exploration of unknown paths. Emotional passages in the minds of those who are either forced, or choose, to face the decisions surrounding the logistics of dying. To say this is an unpopular topic is to minimize the reactions we have had to date. To say that this is a fact everyone must face eventually is a fact as unavoidable as death itself. And on and on then go the Blogs and dialog, questions and scenarios in hopes of preparing for this end. Not as if to assume the answers are easily found. In fact, the answers are often never known. More important than the correct answer are the psychological benefits of the discussion itself.

And naturally after most conceptions, comes birth. The birth for us has come in the form of an idea. An idea that unknown to me was developing slowly year after year in my wife’s mind. While listening to me repeat over and over the same phrase to describe the often devastating impact of my discussions (with patients and families during my Home Care, Hospice and Transitional Care admissions), a seed was planted. “Elephant in the Room” was that phrase. To me, it represented the unspoken understanding that life-altering changes were rapidly at hand, and repeatedly never addressed. Most always, these changes had been a long time coming, and too often the consequences remained unknown. Certain formal planning had been made of course, including my presence which indicated discharge planning or outpatient referrals that acknowledged needs at hand. But often the long-range outcomes and personal emotional impacts were just never talked about.

Enter the birth of “The Elephant”. Elephant in the Room™ is our combined effort to help fill the voids and gaps in communication among family members and loved ones who struggle with discussing and planning for these inevitable changes. Four specialized categories of 96 questions/scenarios represent our collaborative experience as hospice nurse, medical social worker, family caregiver, friend and sibling in a series of questions we encountered at some point in our lives and careers. The answers to these questions are up to each individual as they explore their own unique set of circumstances. Currently in the production stage (and Patent/Trademark Pending) we offer this concept as a guide for use in almost every situation calling for the thoughtful consideration of how life’s changes will affect us.

Caring Choices offers Elephant in the Room™ as an opportunity to engage family and friends in meaningful exploration of the emotional and logistical preparations that life changes will require of all of us. Time and again the situations around us change, and sometimes suddenly without expectation. Please contact us for more information on how to bring attention to and thoughtful discussion about the Elephant in your room.

Frustrated

Nearly every day I hear at least one person say “I never expected to __________.” Often, the rest of that sentence is “live this long.” But I have also heard these other endings to that sentence:

…be in this situation.
…need help to take a shower (or change my clothes, or feed myself, etc.).
…live in a nursing home.
…outlive my husband/wife.
…have to make these kinds of decisions.

It is frustrating, confusing and sad to have to consider leaving your home to take up new residence in assisted living or a skilled nursing facility. I watched my uncle struggle with this decision a month before his death. He could no longer live alone; he could no longer walk without assistance. His legs were dying from the toes up and eventually he couldn’t even stand on his own. He needed 24/7 nursing care and for many of us, there’s only one place to get that – a nursing home.

It’s also frustrating to offer options and suggest solutions to someone forced to confront these “never expected to” statements and then have every idea discounted as unacceptable. People don’t like strangers coming into their home to provide care. They don’t want to leave their home. It sometimes feels like a no-win situation, but the dialogue must continue because the inevitable will occur with conditions worsening into a catastrophe.

There aren’t too many people who choose to leave their home and move into a facility. Usually that change is foisted upon them by infirmity in body or mind or both. If there is no one available to provide needed care or there are no funds to pay private caregivers, the only option may be a nursing home placement. Nursing home residence need not only be seen in a negative frame. Along with 24/7 nursing and personal care, they also offer ancillary services that can enhance an elder’s life. There are opportunities to enjoy meals in dining rooms with other elders who may be in similar situations. There are always activities happening that can bring small or large groups of people together with music, games or spiritual services. There are social workers on site to assist with psychosocial issues that arise (and they will arise). Many nursing home residents can even eat ice cream three times a day if they want it!

So, before you ask your children to promise to never put you in a nursing home or promise your loved one that you’ll never put them in a nursing – go out and visit your local nursing homes. Talk about what options are available if you want to remain in your own home until the last possible day. But also talk about what happens when you become too ill, too confused, or too weak to remain in your own home.

While nearly 80% of Americans expect to remain and die in their own homes, fewer than 25% of us will actually be able to do that. Most people over age 65 are living with 2 or more chronic diseases which eventually impact independence and ability to care for ourselves. We need to manage our expectations. Living well into our 80s with sound body and mind is not likely for the majority of us.

Caring Choices is available to help individuals and families figure out how to stay at home for as long as it is safe and possible, and to make plans for when it is no longer an option without all the frustration. No one can promise that nursing home living isn’t in our future. We need to talk about options without making promises that can’t be kept.