Category Archives: Advance Care Planning

The Mess of Doing Nothing

“I’ve noticed that it’s become easy to do nothing lately.”

These words took effect this afternoon while Cindy and I were driving back from the pizza shop with our Saturday “cheat.”

For months, possibly even years, it has been an awareness I only paid half attention too. As far back as maybe a decade ago, I had become aware that occasionally I would relish the idea of actually “doing nothing” as if that alone were an accomplishment. I would contemplate the options of “maybe tomorrow I will do absolutely nothing?”

Tomorrows come and todays go and before too long what started out as an unavoidable down time, crisis only option (due to illness or injury) shifted to willful decision. I would stay home,  watch a movie, play a video game, or scroll randomly through vintage footage of concerts, history documentaries, or scientific extrapolations on what, why, when, how,  where, and who. To some, this is “doing something.” In regard to an end result or specific goal of actually accomplishing something – the highest score or fleeting knowledge of trivia – my “doing nothing” produces the same.

Let me define my understanding of “doing nothing.” To me, doing nothing means that in place of doing something that can, should, or needs to be done, one simply does anything but.

To the bold-faced seeker of meaning, the reality of doing the things described above, may in fact be “somethings” each and every one. Granted, doing nothing itself is actually doing something right?

Do not discount the benefit of mindless distraction or enjoyable relaxation. One recipe of good heath is rest, exercise, and eating healthy. Volumes of data, debate, and proclamation stand ready to service your needs in these areas. But here is the problem with all this.

Doing nothing in the sense of leaving unattended a wider and larger portion of life’s responsibilities soon becomes more than just chill time. It leads to crisis.

Objects degrade, function declines, or conditions adapt to unsustainable proportions of endurance and stamina to perform basic tasks of life. Now things have become a mess. Just recently I used that phrase to describe the discovery of how to do something new with ease, “That was as easy as making a mess.”  It stands to reason that the 2nd easiest thing to do, besides nothing, is make a mess.  

When weighing the outcomes of a given situation using the choice of doing nothing, compared to doing something with effort, hard work and attention, well, it is pretty obvious where the more positive resolution will exist. What healthy adult does not want a positive solution? Just look at the world today; look at the potential all around you for positive outcomes. Generalized in the world I bet there are millions of people going to bed every night hoping for just such a change. Yet how many are doing nothing?

I once went to see a speaker with very well established charitable efforts already existing in the treatment of the sick and poor. He had founded a free hospital and named it Gesundheit. His question to the group of attendees was “What are you doing?” There is always something that can be done to help others.

During one of my afternoon web scrolling marathons, I came upon an interview with Suzanne O’Brien RN who had started a group of End of Life Doulas. She was discussing the growing interest for more personalized control over the outcome of how we are coping and preparing for mortality. She teaches hope of peaceful surroundings and thoughtful arrangements for the often overlooked tasks of caring for a dependent loved one while their journey ends here with us. In addition to the professional guidance of a hospice, palliative medicine team, specialist, or family practitioner, trained Doulas educate, demonstrate and advocate for the care of patients, family and caregivers. Special lighting, music, and chosen items arranged in almost sacred tenderness,  aid possible relief of symptoms that may occur. Suzanne’s doulagivers.com™ have become a worldwide network of loving hearts, “doing something.”

The basics of care for your loved one, friend, or client are detailed and offered for free. After reviewing the material Doulagivers™ provide, I eagerly joined and have become certified as a Level 3 Doula. Originally I had found this group by a desire to advance my own skills as an RN with end of life symptom management.

Now I wish to share this knowledge in hopes of helping those who do not wish to allow the “mess” that “doing nothing” can create.

In addition to our Elephant in the Room conversation guide elephant-inthe-room.org caringchoices.org Caring Choices offers experience and compassion within the complexities of dealing with death. Don’t let “nothing” stand in your way. Hope for the best, prepare for the worst. Just think about it. Knowing you’re safe and accepted for your wishes can lessen anxiety and stress. Knowing everyone around you is prepared brings peace of mind and comfort. Appreciation of the love makes the loss more palpable and even visceral, but is life at its fullest when facing the unknown absence of it? We comfort each other our whole lives.

The Grass is always Greener

The Grass is always Greener….

This phrase is one of many old adages expressing how the reality of something is really quite different than what you may have initially expected. A list of examples is unnecessary in this case as I am sure most everyone can come up with quite a few on their own.

The point, however, is expressly different. 

Imagine what you think your death will be like. Will it be at home? Will you be surrounded by loving family, friends and cherished memories of your long and prosperous life? Will you be at peace with yourself? Will you be warm and comfortable in a soft cozy bed? Will there be the sweet fragrant aroma of incense permeating the air and tranquil melodies floating between hushed whispers of thanks and gratitude? Will you feel a growing excitement at joining the billions of other souls who have made this unique journey to a better place?

What wonderful ideas, right?

The reality of death is not quite so pretty for many people. Far from the above descriptions of how things could be are the actual ways many people face their last moments on earth.

My life experience including 10 plus years working Hospice (23 total years in nursing) have led me to this place today. A place where I am trying to help everyone understand that the above desires for end-of-life experiences are only possible with conscientious effort, planning and above all else CONVERSATIONS with others.

Too many people suffer needlessly at the hands of a system designed to keep people alive “no matter what.” Mechanical interventions replace natural processes.  Legal checklists become substitutes for conversations and making real choices. Heathcare algorithm “clickfests” take the place of tender touch and genuine human interaction.  These “interventions” are manipulating dying and death into becoming situations of cold, sterile, expensive states of suspended animation in order to wring every last breath out of a body long overdue for its final “resting place.”

Does this sound too harsh? Maybe an acronym to lessen the intensity of suffering? What could we call a system focused on longevity and not quality of life? What could be appropriate in our acronym-infested healthcare system? I know!  Let’s call it,

S-ervices, A-gainst, D-eath … and what it really is: SAD!

 

Do not misinterpret my compassion for minimizing suffering as a fatalistic wish to end all happiness by “killing” everyone before their time. Such an assumption could possibly give strength to what pushes death even further into the abyss of denial.

There are wonders of technology and dedicated people everywhere that can save lives. The resources are almost limitless in both material effort and will when saving lives.  When there is an opportunity, we almost all rush to the aide of anyone in distress.

But isn’t dying simply just life at its most amplified state? Isn’t everyone’s emotional, mental, physical, and spiritual culmination of lifetime energy at its most powerful when people are dying? Why is it that the one moment in life – that we get no other chance at repeating – is stripped of resources when they are most needed? 

What I support is a preservation of that kindness and love we seek. While still capable and healthy, there is still time to offer a greater acceptance of dying and recognize it as the catalyst from which all appreciation of life began. When we can accept our limited existence, it intensifies each moment and delivers the “spirit” of living as no other act can. We can then set aside our fears and embrace the loss of a loved one with a renewed understanding of how important this end time is.

We have tossed death into the cold, damp corner of our minds where we hope we will never need to go again. We label our relief at not having been struck by lightning as good luck or the Grace of God, and some say we have “survivor’s guilt.”  We feel even more relief to be alive. 

Hourglass of Life and Death

We can learn to die better in this world. There are exceptions, for sure:  trauma, sudden onset of disease, and the hateful violence of some people. But for the majority of human existence, there is a natural compassion and concern to help one another. Consider the shape of our life to look more like an hour glass instead of a funnel. Instead of narrowing options and resources as we circle nearer the tapered end there is an acceptance and an expansion of personal options once we pass through that point where quality of life reigns over quantity of days. We are embraced and comforted approaching the natural end of our life. Please have meaningful conversations with your family friends and loved ones about how you would want to die. Do not look across the fence of death and think that the grass will be any greener, less complicated or less problematic than the reality you live in here.

Dinner Date

Please don’t turn your head down, and quickly look away
You’re all going to die, someday…

Woke up here this morning my dream’s message, still quite clear
Not all full of worry, in denial’s hopeless fear
Melody still in my head of word’s so soft and kind
Our end of lives in comfort, safe with peace of mind

The dream had special meaning of the beauty of this life
And the need to represent it as with marching drum and fife
Let me tell the story of waking from this dream
Singing “you’re all going to die”, in crescendo to a scream

I was….

Sitting in a restaurant, the evening crisp and cool,
Gentleman all laughing, at the bar no empty stool
Ladies all so lovely, faces bright and flush
Their picking at their salads, sipping on their blush

I overhear the comments, and preparation’s planned
To spend the lifetime gathering, more valuables and land
It suddenly tears into me, like hot iron through my brain
Is assuming that there’s time enough, all we can attain

Please don’t turn your head down, and quickly look away
You’re all going to die, someday…

Living in each moment, like it’s precious, pure and dear
Don’t be caught in prisons, made of- denial’s fear
Live your every minute, like its precious, dear, and pure
Hoping for the future, and what may be in store

Please don’t turn your head down, and quickly look away
You’re all going to die, someday…

© Caring Choices  2017

“You can’t take it with ya.”

Earlier this week, as I lay iced up on the therapy table after my session, I overheard a light-hearted laugh and discussion about plans for something that involved what I imagined to be a pretty hefty amount of cash. Having only caught the last exchange of the entire conversation due to unintentional proximity, I was struck by the gist of the ending phrase as the parties were walking past my doorway and continuing on about their day.  All that I could hear being said was “… might as well, you can’t take it with ya.” Now it’s not that I have never heard this saying before. In fact, very likely I have heard it hundreds, if not thousands, of times. But that day, it registered in my mind with a completely different reaction as any other time. Maybe it was the light-hearted giggle and soft tones, or maybe it was the representative acceptance of what I now imagined the meaning that this common phrase infers.

Having worked as a nurse for over 25 years, I have been exposed to the traumatic effects of the loss of independence and death. I have witnessed the impact of these events on patients, their families, loved ones and friends in a multitude of settings, circumstances and degrees of intensity too broad to include in this forum. In all of this time however, there were very few, if any, references to any material assets which would not be taken “with ya.”

There are, unfortunately, innumerous examples I can remember that involved the inability and unpreparedness to accept the new reality that had now been forced upon the present.

But when we say the phrase “you can’t take it with ya,” it seems there is an undeniable acceptance of death or changed realities already so well in hand that that it can be so casually joked about.  Why, then, is the reaction so intense for the grief stricken who are seemingly left helpless at this change in condition when it becomes a reality? Why is the reality of “can’t take it with ya” such an unimportant consideration until death becomes impossible to avoid?

The answer for myself is that I never want to imagine the “with” part of that statement.  I personally have filled out my Will and Five Wishes forms.  I write these blogs hoping to get others to address the possibilities of “with” before it becomes “now.”  I still don’t feel very casual about the “with.”

But this fact has not stopped me from recognizing the importance of planning for the time when I have lost my independence and have left this world and my family and friends to remain and deal with my departure in however they best can. (One glimpse of this inevitability came just last month when I underwent a right posterior total hip repair.) No one gets to choose how they die. Very few know when. Even fewer look forward to it sincerely. But there is nothing in this world stopping anyone from discussing how they may wish to be cared for in the event of a loss of independence, on any level, or how they would like to be treated and have their physical body and material things handled when that “with” finally becomes “now”.

Please, by all means with every breath of your life, hope for the best. But my friends, please also strive for happiness, love, and compassion in the world around you.  Perhaps more importantly, be prepared for the worst. Discuss your wishes, feelings, and beliefs with your family, friends, and loved ones. Get as much in writing and scanned into medical records backed up by legal consents and authorizations in the hope to lessen the tragic impact of inevitable changes on you and those you love. Don’t let the burden of “with” become someone else’s problem “now.”

©2017 Caring Choices

Grief and Gratitude

People frequently say: “I don’t want to be a burden to my family.”  And yet without conversations, planning and guidance, that’s exactly what we may become to them.

A loved one’s involvement through the end of life experience, especially having decision-making responsibilities, can greatly impact how they cope through their grief and bereavement.

  • If they feel guilt and remorse over making decisions, they’re likely to feel guilt, maybe resentment, through their bereavement.
  • If they have the benefit of knowing our values, beliefs and decisions, the emotional burden of decision-making is decreased and bereavement is likely to be less fraught with negative emotions.

Below is our illustration of the general concept of how we experience grief with the actual “closer to the truth” experience of grief.   Some assume that the deepest grief is felt immediately at the loss (as indicated by the darker shade of the line).  As time passes, and we move away from the moment of loss, the shade of the line grows lighter – so does, supposedly, the depth of our grieving feelings.  In reality, grief and bereavement have a less-defined trajectory as illustrated in the second “line”.  Grief is different for each individual, as it is for each situation, whether it be death, divorce, loss of job, loss of independence, etc.  One size does not fit all.

Loss and Grief pic

There is a method of coping with grief that may seem absurd.  Yet, it can be helpful when you’re ready to consider it.  The notion is that of gratitude and creating a Gratitude List.  Not, of course, that you’re grateful for the loss (death, divorce, loss of job, loss of independence, etc.) BUT that you are able to see how the loss transformed your life in a positive way.    I’ve written before about the year I turned 30:  One month after my 30th birthday, my Dad died unexpectedly.  Four months later, I was filing for divorce and leaving my home with my then 8-year-old son to move back in with my Mom.  At that time, I could only focus on the enormity of the losses.

Shortly after Mom died (five years later), I realized that had those things not aligned as they did, I (and my son) would likely not have had those years with Mom so closely in our lives. And there began my Gratitude List of experiences after deep losses:

  • We were able to support each other through the loss of Dad.
  • I was able to be Mom’s primary caregiver through her final years of life.
  • I learned a lot about family caregiving that influences my life and work today.
  • We learned first-hand the benefits of Hospice care.
  • My son had the benefit of living with his Grammie for five years.
  • We had the benefit of being prepared for Mom’s death because we had time together to talk.

I’ve added to my Gratitude List with other losses over the past 22 years (that’s how long my Dad is gone).  Some might say this is simply finding the silver lining in each cloud but I believe it’s more than that.  It’s not just positive thinking or reflection.  It’s about recognizing and accepting positive changes in your life when really awful things have happened.  There is a research group at UNC Charlotte who works on this topic, which they termed “post-traumatic growth”.  When you’re ready, check them out.

Caring Choices understands that loss is inevitable for most of us.  Falling into the depths of despair because of loss can be lessened.  We have the power to prepare people we love for loss which can allow them to eventually make their own Gratitude List.  It starts with communication. We can help.

© 2015 Caring Choices

More Than a “Right to Die”

So much of today’s press seems to be about the “right to die” or “dying with dignity” movement.  We get caught up in the hyperbole of words like “physician-assisted suicide” or “euthanasia.”  I believe that focus misses some very important points that are beneficial to every person who faces death (their own or that of someone they love).  I prefer to focus more broadly on the right to decide, the right to participate, and the right to be prepared.

Since no one knows when a personal medical crisis, traumatic accident, or terminal diagnosis will happen, it’s imperative that we begin meaningful conversations with people we love while we’re healthy and able to communicate.  It’s important that we speak with our healthcare team (whether that’s our primary care/family doctor or a whole team of specialists) about risks/benefits and options.

Waiting until we’re faced with a never-before-discussed situation is absolutely the wrong time to begin advance care planning or end of life counseling.  At that time, we’re forced to make tough decisions in very limited windows of opportunity — when emotions are chaotic and reason is hindered.

Here are some significant arguments from a growing body of research (and from our experiences) promoting the importance of advance care planning.  I’ve noted some key phrases in bold font:

  • Attending to emotions, understanding their purpose in decision-making, and exploring patient values can help surrogate decision-makers make an “authentic decision … informed by knowledge of the patient’s values and motivated by an intention … that respects the patient as a person”1
  • “We must all realize that if we don’t make these decisions soon enough, someone else, often a family member, sometimes a caregiver, will be forced to carry the terrible weight of making these decisions for us”2
  • Major stressors for surrogate decision-makers: unsure of patient’s preferences, poor communication by clinicians, insufficient time, and uncertainty or guilt over decisions3
  • The better educated family members and surrogate decision-makers are about the needs of the patient, the better they are able to cope with the demands of their decision-making roles4
  • Decision-makers express feelings of guilt, doubt or burden related to making end-of-life decisions
  • Negative emotions are mitigated when patient’s wishes are known.

We believe there are considerations in guiding successful advance care planning/end of life conversations.  Below are 10 such considerations that you might use to begin conversations with people you love:

Conversation Considerations blog pic

Caring Choices proposes everyone should have a “right to decide” what type of care they want and when they want it.  We also believe that decision-makers have a right to be prepared to step in to advocate for a loved one who can no longer communicate their wishes.  Family and friends have a right to participate in planning when a loved one asks them to be a caregiver.  Stating that “my family will know what to do” or “my daughter will take care of me” are bold assumptions if you’ve never had conversations with or commitment from those you want as your decision-makers and caregivers.  Consider the conversation(s).  Then schedule time to have them. It’s your right … and theirs.

Footnotes:
  1. Scheunemann, L.P., Arnold, R.M. & White, D.B. (2012). The facilitated values history: Helping surrogates make authentic decisions for incapacitated patients with advanced illness, American Journal of Respiratory and Critical Care Medicine, 186(6), 480-486.  DOI:  1164/rccm.201204-0710CP
  2. Thompson, J. & Fry, P. (2012). Call to action: What needs to change to improve care and allow sustainability.  In B.J. Jammes (Ed.), Having your own say (c. 16, pp. 231-235)  Washington, DC:  CHT Press
  3. Wendler, D. & Rid, A. (2011). Systematic Review: The Effect on Surrogates of Making Treatment Decisions for Others, Annals of Internal Medicine, 154(5), 336-346, W-100-W104.
  4. Connor, S.R. (2009). Hospice and Palliative Care:  The Essential Guide (2nd Edition).  New York, NY:  Routledge

© 2015 Caring Choices

 

 

 

 

A Line in the Sand

I had the opportunity this week to attend a seminar provided through the Hospice Foundation of America titled The Longest Loss:  Alzheimer’s Disease and Dementia.  One of the presenters, Dr. Kenneth Doka, referred to advance care planning as “drawing a line in the sand.”

Initially, a line in the sand is drawn to signify a point at which no one will cross.  But once water flows over the sand (change!), the line blurs or outright disappears. Then, it becomes time to re-evaluate and draw a new line.

An interesting fact about effective advance care planning (ACP) is that it’s never a once-and-done act.  It demands multiple conversations, oodles of information, shared decision-making, and the ability to plan for, and evaluate, changes as they occur.  Hence, the line in the sand metaphor.

Your initial line in the sand may be a broad decision in your forties to “never have a feeding tube” or “never put me in a nursing home.”  Here’s an example of how a line might change:

Let’s say you’re a healthy 60-year-old man involved in a motor vehicle accident who now requires a feeding tube for a brief period until you’re able to eat normally again.  And maybe you also had your hip replaced because it was broken in the accident.  So, now you also need a short term rehab stay in a nursing home for therapy with your new hip.  In this case, you might change your “nevers” to allow your family to insert the feeding tube for this (expectedly) brief time and you’re okay with a nursing home rehab stay.  So, you move your line in the sand. Lines in the Sand

Advance 20 years and you’re now an 80-year-old man with Parkinson’s Disease and fast-advancing dementia.  You live in your 2-story home with your wife of 50 years and she’s been your primary caregiver.  You are dependent on your wife for all of your care but she’s frail herself now and unable to move/lift you as she once did.  And now you can no longer safely swallow food or drink. 

Where is your line in the sand now about a feeding tube or nursing home placement?

In order to obtain CEUs for this course, I was required to take an online exam.  One of the exam statements addressed the impact of early advance care planning and conversations on grief (specific to dementia, but it is fitting for all scenarios).  Early ACP is important because:

  • The person with dementia [added by Cindy: end-stage heart failure, end-stage lung disease, cancer, aphasia, fill-in-the-blank disease] cannot participate.
  • Families already burdened by caregiving may disagree about care options.
  • Despite the nature of the disease, death may occur suddenly and without warning.
  • All of the above.

I’ll let you decide the correct response.

People may believe this line-in-the-sand approach to conversations about healthcare options indicates that we should wait until we reach a certain age or health condition and THEN decide where to draw our line.  Perhaps some believe that deciding at age 30, 40 or 50 what I want when I’m 70, 80, or 90 is impractical.  Things change rapidly in today’s medical arena so maybe in another 20-30 years I won’t have to worry about a feeding tube or nursing home placement because they’ll be able to fix whatever is wrong with me and I’ll be good as new.

Except we know that the aging process changes our bodies in ways that are not always readily apparent and changes in health can be swift and unrelenting.  We know that heredity gives us increased risk factors and predisposition to certain diseases that we are likely unable to change.  We know that chronic illnesses (including cancers) take their toll eventually on all those who live with these diseases.  We know that illnesses like ALS, Parkinson’s, and Dementia are progressive and irreversible. We know that every person alive will die.

Talking about how our health will change as we age and as diseases occur will not make either of them happen faster than nature occurs.  Talking about the types of care we don’t want will not diminish the types of care we choose.  Talking about dying and death will not hasten death’s approach at our doorstep.

Talking earlier however, WILL prepare you and the people around you (loved ones, caregivers, healthcare providers, employers, co-workers, etc.).  It will prepare you to draw lines in the sand and then re-draw them as conditions/ideals/values change.  It will prepare you to say and do things that are important to you now.  It will give you the opportunity to help prepare those who will grieve your death.  It will prepare those who survive you to embrace their grief as a natural part of life, wrapped in the knowledge that you loved them, you’ll miss them and that you expect them to go on with their lives (and that it’s okay to do so).

Caring Choices helps you draw that first broad line in the sand and then define or move the line as age increases and health declines.  We can give you and your family tools to start the conversations to share decisions that will help survivors after you’re gone.  Don’t deprive your loved ones of peace after your death.  Draw a line in the sand now, knowing that you have the option to move it as often as needed.  Talk.  Now and often – until you can no longer do so.

© 2015 Caring Choices

End of Life is More Than Death

Too often the phrase “end of life” is synonymous with DEATH.  When Jim and I talk about end of life, we focus more on the final year of life.  The moment of death is just that … one moment.  One minute you’re alive, breathing on your own (or assisted with machines); the next minute, you’re not.

Sounds harsh, right?  But yet each of us will face that final year of life, as will those who share life with us.  It’s difficult to comprehend, isn’t it?  Many final years will only be examined in retrospect by those left behind, as I’ve done below about my parents.

My Dad’s final year (August 15, 1992 to August 15, 1993) was spent building my house, working on my brother’s store, and fixing things up around his and Mom’s house.  He went to church every Sunday as he did his entire life.  He enjoyed holidays with big family gatherings. He watched his grandson play baseball and soccer.  He volunteered as a Fire Policeman for Tuckahoe Fire Company.  He helped people with their carpentry projects.  He read his Bible.  He enjoyed Mom’s home cooked meals.  He loved and ate a lot of ice cream.  He lived life.  He also had high blood pressure and was taking medication (for several years).  He had high triglycerides (and also took medication).  He was overweight by probably 30-40 pounds.   He had arthritic knees and required replacement.  He replaced one in November 1992.  He had a painful recovery that lasted for six months.  Then, he got shingles which he suffered with — they were intensely painful — for a couple more months.  He saw his kids turn 35 and 30.  He celebrated his oldest brother’s 50th wedding anniversary (that’s the last picture I have of Dad and Mom together).  On August 11, 1993, he had his first heart attack which sent him to the hospital.  During the next four days, we all assumed Dad would be coming back home soon. On the morning of August 15, 1993, he had his second (and would-be-fatal) heart attack.  He died 14 days before his and Mom’s 45th wedding anniversary.

My Mom’s final year (May 17, 1997 to May 17, 1998) was not as “busy” as Dad’s but then Mom had a chronic illness since she was a little girl, which limited her functional level each year as her age and disease progressed.  But she still lived life on her terms, taking care of my son while I was at work, cooking and baking as much as she could, enjoying her soap operas on TV, and having family holidays one last time.  Mom’s lung disease – Chronic Obstructive Pulmonary Disease (COPD) – was much more “predictable” than Dad’s heart attacks.

Trying to wrap our brains around the fact that some period of 12 months will be our final year of life is daunting.  The real challenge is in knowing when we begin our final year.

COPD and heart disease (not acute heart attacks), like many chronic illnesses, have baseline trajectories that physicians can use to better project disease progression and prognosis.  There are a lot of fancy disease trajectory images on the internet but I drew the two below to illustrate that even in the “final year,” there are points of interest not only in living our lives but also in planning for the future … typically a future without us in it.  Like my previous blog on Recognizing the Signs, these trajectory graphs illustrate the importance of knowing how to recognize and react to the signs that our bodies are giving us.

Dads Final Year

Moms Final Year

 

 

 

 

 

 

 

 

 

 

 

The signs are more readily apparent for people like my Mom than people like my Dad.   Understanding that diseases have trajectories can help us better prepare for that final year – the end of life – and not just focus on the moment of death.  When patients and their families understand what’s ahead, and they’re given tools to prepare for anticipated scenarios, they will have better outcomes.  They won’t cheat death, but they may savor more of their final 365 days knowing that they’ve made a plan that will help them and their loved ones when that final moment arrives.

Caring Choices focuses on living through the end of our lives, not merely planning for the final days/hours leading up to death.  It’s not easy to talk about, but ignoring it won’t make death go away.  We can help you talk.  We can help you plan.  We can help.

© 2015 Caring Choices

Competing Agendas

Watching someone waffle between hope and despair is a heart-wrenching spectacle.  Having the benefit (or is it a curse?) of a healthcare education, she can see what’s happening to someone she loves and idolizes.  She is suspicious that the specialist may not be sharing all the options with her family, yet she’s hesitant to question the physician for fear of taking away the glimmer of hope she sees her loved one clinging to.    Of course she doesn’t want her parent to die but she also understands that everyone does … and especially when she sees the signs so blatantly in front of her.  Her agenda is to allow loved ones to cling to their hope while she prays that the doctor will soon address the elephant in the room.

The physician, she says, has never spoken of anything except another round of treatment.  There has never been a compassionate discussion with the patient and family about goals beyond treatment.   There has been no recommendation of a palliative care consult for pain and symptom management.  This specialist’s agenda is to follow the treatment trail until it ends, either peacefully or, more likely, in a hospital as a last ditch effort to count one more day on this earth.

The spouse of the patient knows something is amiss yet she doesn’t question the physician.  She and the patient are of the generation when the doctor knows best and you don’t question authority.  She recognizes her husband’s decline and fears for her own usefulness when he is gone.  He is her primary caregiver and her lifelong partner.  Her agenda is to love him until his final breath and not allow him to know her worry for her future without him.

There are still others involved in this scenario with agendas of their own in the care of this patient and his family.  Some have the best intentions but are restricted by the nature of their position.  Still others may struggle with the moral or ethical question of when to share information with the patient without the physician’s authorization.  (A suggestion of hospice is often overruled by reasoning such as “not appropriate,” “not there yet,” or “too soon for that.”)  Some are friends of the daughter and offer suggestions and guidance based on similar paths they’ve walked.  Some are professional healthcare colleagues, not involved directly with this patient, who are ready to support whatever decisions the family makes.

The most important person whose agenda is not addressed in this scenario is the patient himself.  The assumption is that he’s clinging to hope for himself when in reality he may be sharing the same worries of his wife – what will happen to her when he’s gone?  He is likely concerned about his daughter – “Daddy’s Little Girl” – whom he’s always supported through these kinds of losses.  He may very well understand that any more treatments are going to be useless for his condition, yet he doesn’t want to take away the doctor’s hope of curing him.

These competing agendas can (and often do) occur to varying degrees in every end of life Competing Agendas TALKsituation.  The only way to end the competition of different agendas and avoid unspoken concerns, unwanted treatments, and make room for compassionate care is to talk.  Talk with family.  Talk with physicians, including specialists.  Talk with religious advisors.  Talk with friends and colleagues.  Talk to whomever matters to you … but do it before things change so rapidly that the agendas are no longer relevant.

Caring Choices can help you align agendas to eliminate competition and ensure compassionate care when you need it the most.  Talking about what we want as the patient, what we need as the loved ones and what we’re able or not able to do as the healthcare provider is the most valuable gift we can give each other.  Talk is not cheap; it’s priceless.

© 2015 Caring Choices

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:0147 GW pic

  • 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)?

© 2015 Caring Choices