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Posts Tagged ‘end-of-life decisions’

On Monday I talked about my visit to the Medical campus at The University of Colorado Heath Sciences Center’s monthly ethics discussion. This month they discussed Physician Assisted Death (PAD). The first thing that caught my attention was the shift from Physician Assisted Suicide to Physician Assisted Death. What caused the shift in terminology? Is it a way to make the legislatures in our country look upon these actions differently? Does it take away the stigma of suicide? Does it differentiate between suicide as we traditionally think of it and as a choice in dying?

The speaker presented some very interesting statistics that has been collected since 1997 about those who choose Physician Assisted Death. The most startling was that of all the prescriptions written with the intention of PAD only 64% actually follow through on taking the medications to end their life. Here are some other interesting statistics:

*74% were over 65 years of age

*54% had a college degree or higher

*85% were enrolled in hospice

*94% were insured

*65% had a cancer diagnosis

*94% were Caucasian

*62% were men

I share these statistics because we need to understand the outcomes when we institute societal, cultural, and legal shifts related to end-of-life care.

I’ve spent over twenty years sharing the journey of those facing chronic and life-threatening illnesses. I’ve always had a copy of Derek Humphry’s book Final Exit on my bookshelf. I’ve had numerous clients ask to borrow the book as they think about end-of-life care. In each of the cases I have always found that having the book available didn’t encourage taking one’s own life, but it did take the taboo out of the topic. It opened up many dialogues about suffering, pain, depression, assumptions about life, and a host of other topics.

When we de-stigmatize PAD we can begin to have open and honest conversations concerning advanced directives. These directives are important not only between the patient and the medical provider, but for the person who is your Durable Power of Attorney for Healthcare. Everyone needs to be on the same page. There are only four states that have PAD in the United States. I know that many more states are going to begin these conversations and that’s an important step, allowing us all to have options in our end-of-life care!!

Are you and your family facing a diagnosis of a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Looking to explore your views about end-of-life care through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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We’re a verbal culture and we like to talk.  People make their entire living simply by talking and yet when it comes to some crucial conversations we stay so far away that we think we’ll live forever. 

Patterson, et.al. wrote a book called “Crucial Conversations” for the business world.  It spoke to the corporate world about how to have important and often awkward or uncomfortable conversations with employees about performance and other issues.  It’s amazing that the medical community hasn’t come up with its own version of this book because most doctors, even oncologists (who deal with more death than most other specialties other than possibly emergency/trauma medicine) won’t or don’t talk to patients about end-of-life care.

There was an article on Comcast this week citing new recommendations for the cancer community from the American Society of Clinical Oncology (ASCO).  The ASCO recommendations are for doctors to have those crucial conversations before the person is rolled into an emergency room or they are on life support.  Too often we’re finding that patients aren’t even aware that comfort care/hospice is available and suffer needlessly as does their caregivers. 

I think the article puts it beautifully about the capacity of you, the patient, they say, “Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it.”  I understand that there are too apologies that doctors have to make that is not comfortable.  The first is at the time of diagnosis when they say, “I’m sorry to tell you, but…” and the other is “I’m sorry to say that the treatments aren’t working and there are no clinical trials available, so it’s time to talk about end-of-life care.” 

The statistics given by ASCO says that “40 percent of advanced cancer patients have what it calls a ‘realistic conversation’ with their doctors about what to expect and their choices of care”.  The frightening part of that statistic is what follows next, “The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life.” 

The ramifications of that last sentence are that at the end-of-life instead of being comfortable, they are dealing with side effects from chemotherapy and not able to live life unencumbered from machines and hospitals.  No one wants to die but it is inevitable.  Why wouldn’t you want to be comfortable, in the surroundings you desire, and with people who love you the most. 

This is the hardest part, you, the patient, may have to be the one to bring up end-of-life issues with your doctor (no matter your diagnosis).  You may have to be the one who has the strength and the courage to approach your doctor and have this “crucial conversation”.  You may have to be the one who assures the doctor that it’s appropriate and okay to discuss end-of-life care.  You get to be the physician’s coach on end-of-life issues pertaining to you…after all who better to do this job.

I know it’s scary, but if you need some support or have questions about end-of-life care or how to speak with you medical provider you can e-mail me at greg@survivingstrong.com.  Don’t leave your end-of-life care in the hands of another person.  Empower yourself to make these decisions!

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Welcome to Caregiver Friday!!

We’re rounding the corner to the home stretch on this 9 part series on Caregiving.  It’s amazing to think of the complexity of caregiving.  When I told people I was doing this 9 part series they wanted to know what is there to caregiving…you do what the person needs.  That’s obviously the simplistic version.  It doesn’t take into account all the minutia that often is second nature, not a conscious process.  It’s those aspects of your being that are being exercised to the max.  This is the opportunity to think about your journey as a caregiver, and down the road, what you’ll do with these gifts and talents you’ve so carefully nurtured and allowed to bloom

V is for Vigilant

When I was thinking about being vigilant, I wanted it to be different from that heightened state of anxiety where you are on pins and needles all the time.  There will obviously be points in time when that may be the case if the patient is critical, but vigilant is about a steadfastness, and an awareness.  As the caregiver your awareness can not only help a patient get better, but can certainly prevent catastrophe from happening.

As a caregiver you’re watchful.  This is key to aiding the patient because your awareness can detect subtle changes that the patient may not even recognize.  You may be attuned to certain aspects of the patient’s personality or character so any change is noticeable to you.  If you’re caring for the patient’s physical needs you’ll also be familiar with their physical being and if any subtle changes occur, you’re the one who will notice. 

This vigilance is also a gift to the medical community.  Having someone close to the patient who is aware of the person’s current state is key so if changes do occur you can notify the proper medical professional.  I believe that your watchful, alert state (hopefully not all-consuming) is a safety net for the patient and the medical community.  You’re the linchpin (as Seth Godin puts it) in the relationship between the doctor and the patient and other support personnel. 

Those were examples of supporting the person’s physical needs.  You’re also in a position to support their emotional and spiritual needs.  If you’ ve been around this person for a while you know when they are down or hurting (emotionally).  Having the capacity to recognize this and make arrangements for social connection will aid the patient’s well-being and may give you some free time while the patient visits with friends and family.

The spiritual needs of the patient may be a bit harder to spot, especially if the patient wasn’t particularly religious or spiritual before the diagnosis.  Sometimes it’s good to use yourself as a barometer.  If you’re feeling lost, internally, then maybe the patient is too.  In that case, a spiritual director may be the right person to help with the “big” questions.  I’ll be talking a bit about that more in the coming weeks as I begin to explore with you hospice and end-of-life care (November is National Hospice Month).

Thank your for your being vigilant.  Thank you for the being alert and in tune enough to recognize the changes that may occur.  Thank you for caring and most of all; Thank You for being a caregiver!

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People are living longer today than they did 100 years ago.  In 1900 the average age at death was 47 years old.  Obviously technology and scientific advances have given us many more years of life (if we don’t develop an illness).  So what about this so-called life, how are you spending your time? 

Last night I went to a talk at the synagogue titled, “Making end-of-life decisions”.  When I walked in the majority of the folks in the room were much older than me.  Upon entering one woman told me to go home because I was too young to be at this talk.  Isn’t that an interesting assumption?  She was telling me because I wasn’t “old” I didn’t have anything to worry about for some time.  Who guaranteed me a life expectancy of 90?  There are no guarantees and that’s why the end-of-life discussions have to take place in every one of our homes.

We’ve seen many people die on television and the movies.  Let me tell you as someone who has been at more hospital beds and funerals than I can count; it’s not that glamorous.  What will make you the most comfortable?  Remember, don’t worry about what your family wants because these decisions may affect them on the emotional level, but it impacts you on the physical, emotional, and spiritual levels so your opinion counts.  In fact, only your opinion counts.

There are tools out there that will guide you through the process of making these end-of-life decisions, but it all starts with a conversation.  Both the doctor and the rabbi encouraged us to put our wishes in writing.  In this day and age of technology I would encourage you to get a small video recorder like a Flip video camera and record your wishes.  This eliminates and discussion about is the document authentic and were you of sound body and mind to make these decisions.

Western culture doesn’t talk about death, except when we are telling a story about a tragedy or recounting a story line in a movie.  Death is kept at arm’s length and yet it’s inevitable.  I guess the question I have for you is the one I ponder for myself quite often, “Is it the idea of pain and suffering that stops you from thinking about death, or is it the idea of not being?” 

Irvin Yalom wrote a book called, “Staring At the Sun”.  It discusses the fact that we all have death anxiety.  I told my father about this book and he told me he was the exception, he didn’t have death anxiety.  The next words out of his mouth were, “You know I have fewer years to live than I have already lived”…sounds like death anxiety to me. 

I feel fortunate that I can have these discussions with my family and friends.  In fact, I’m the Durable Power of Attorney for healthcare for both my parents and many of my friends.  They asked me to serve in this capacity because they know we’ve had lengthy discussions about their wishes and more importantly they know I’ll abide by their wishes.  Who do you have that you’re confident could fill that role?

This is the first of many posts that will address end-of-life issues.  I’m approaching the 500 post mark and there are only a handful of posts on end-of-life care…does that tell you something?  Let’s turn the tide and take better care of ourselves in all areas of our lives and that includes making sure we have the best death possible.

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