Monthly Archives: September 2015

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 us2
  • 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.

  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