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Posts Tagged ‘end-of-life care’

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!!

I’ve been thinking a lot about the recent death of Elizabeth Edwards.  The news spoke about how she was a “mother to the end”, leaving a letter for her children.  Edwards has a 28-year-old daughter and then two children around 10-12 years old; as we all know from the headlines she also has an ex-husband.

So I began thinking back to all the support groups I facilitated to reflect on the differences in caregiving between a spouse and a child. I’m focusing on end-of-life care as we have just passed National Hospice Month and the death of Elizabeth Edwards is in the news.

When spouses are caregiving for someone who is terminally, as you know, you’re reflecting on times you spent growing up with the person you’re caring for, not only chronologically, but emotionally and spiritually.  There is an investment in the relationship and it’s perfectly natural to begin wondering what will happen to you if the person you’re caring for dies.  (I’ll address living after the death of a spouse in coming weeks) 

Hopefully if there is time you can think back on those times that provided you and the person your caring for the deepest bonds, positive memories, and what it was like to be part of a team.  You’ve been a team throughout the illness so that story continues.  It is also a time to grieve together on things you won’t get to do together in the future.  This is about the reality of end-of-life care. 

When the adult child is the caregiver for the parent there are different dynamics.  I remember when my grandmother was quite elderly and on a decline she apologized to my mother for having to reverse roles.  She was sad and embarrassed that she couldn’t still be in the parental role, even though my mother was more than willing to care for her mother.

Adult children, depending on if you will have a surviving parent or not, will be facing life as an orphan.  You’ll have to complete your life journey without parental guidance in the physical realm, and rely on memories and lessons learned throughout the years.  

Caregiving is an individual experience.  It’s important that when you hear someone’s account of their caregiving experience that the listener understands the ramifications of the impending death of the patient.  I’ve been focusing on end-of-life, but the journey of these emotional and spiritual shifts come when the parent or spouse is diagnosed because everything changes.

Understanding the differences between spousal and child caregivers is important for support group facilitators to understand.  If you’re concerned that your facilitator doesn’t address these differences have them make contact with me and I can help guide them to make your support group experience truly supportive.

What’s your caregiving story?  How do you think it differs from others?  What has come up for you since becoming a caregiver?  I’d love to be your sounding board.

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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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Welcome to Caregiver Friday!!

Just when you think being a decision maker in the role of caregiver/wellness partner a new study lays an extra burden of responsibility on your shoulders.  The findings are in reference to a study done on patients who had been labeled in a permanent vegetative state.  In many cases the family is asked if they want to continue the person on life support or have other extreme measures performed.  That decision can be easier if you know that the person is truly in a permanent vegetative state.  But what if you’re not sure.

The Wall Street Journal (WSJ) reported on the study that was published in the New England Journal of Medicine.  The study examined 23 patients who had been diagnosed as being in a permanent vegetative state.  Four of the patients showed signs of consciousness…can you believe it 4 of 23.

Using MRI scans the patients were asked questions and their brains were monitored.  Certain responses would light-up certain parts of the brain.  The WSJ article stated “Four of the 23 vegetative patients responded to the commands and exhibited brain activity in the same areas as healthy control subjects”.

When trying to make potentially life and death decisions as a caregiver (hopefully you were mindful to have a Durable Power of Attorney for Healthcare) you are now burdened with the quandary, “Is the person I’m caring for really in a permanent vegetative state or is he/she one like in the studies that can still responds to questions?’ 

I believe the medical ethicists are all gathering to take up this matter on a big-picture discussion.  How would you handle this situation as a caregiver?  If the decision is your, how will you know whether the person you’re caring for has some level of consciousness?  

Dr. Allan H. Ropper said, “the line between consciousness and unconsciousness will be blurred” as scientific understanding of the vegetative state depends.  This is not the most comforting statement for those of you caring for someone who is facing end of life issues or has been in an accident, but for now it’s the reality.

Who do you have that you can discuss these issues with such as a medical ethicist or spiritual director?  Did you have thorough conversations with the person you’re caring for about end-of-life issues?  There are those who even though they may have brain activity, on whatever level, wouldn’t want to live the rest of the days unable to speak, move, or communicate.  Even if the brain might register some activity is this a life?  You know this will wind up in the courts at some point, but for now the onus of responsibility is on you.

I know there is more to come; this is truly the tip of the iceberg.  Please have conversations with your loved ones about end-of-life care.  Decision-making for caregivers is tough enough without the burden of deciding one’s level of consciousness.

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Healthcare is being debated in Congress and one of the issues on the table is the rationing of healthcare.   People are concerned that treatment they need won’t be available to them because there are parameters that prohibit you from receiving a particular treatment, medication, or even surgery.  NPR had a journalist on discussing this matter and some of the callers brought up some very interesting issues.

One caller L. stated that his father at 87 years old needed a valve replacement.  The family sat with him and discussed the pros and cons of the surgery.  After careful consideration they decided not to proceed with the surgery.  The outcome?  He lived for another two years and didn’t have to spend six months recuperating from a drastic surgery. 

60 Minutes had Ira Byock on discussing these parameters and it brought some interesting issues to light.  One patient age 63 was having lung and kidney failure.  He was going to need a double transplant, but in order to be considered the patient needed to start exercising and eating.  Dr. Byock discussed the possible need for CPR and the patient decided that yes, he wanted to be resuscitated in case his heart stopped.  Is there any quality of life at this point?  I believe that’s the question that is on everyone’s mind; how can you decide what’s enough and when do you stop any treatment allowing the patient to die.

I wrote an entry about informed medical decision-making.  It’s important that each of us has as much information as possible when making these life and death decisions.  Is it fair that the medical community puts conditions on care?  In order for a recovering alcoholic to receive a liver transplant they need to have at least one year of sobriety, that’s a parameter that doesn’t seem to be argued.

During these debates I hope you’re considering your own quality of life and what limits you would put on your own treatment strategies.  These are the times when digging deep can save you a lot of pain and anguish and save your family from making decisions they may not want or be able to make on your behalf.  The other side of the coin is deciding when it’s time to fight for treatment you believe will extend not only the length of your life, but the quality to live that life to the fullest.

Take some time to really consider your wishes as it pertains to end-of-life care.  Think about what you and your family are willing to endure.  The 60 minutes interview talked about how many people live out their last weeks of life in the intensive care unit.  Is that something you would want for yourself or would you prefer to have other plans in place.  Talk to your providers about all the options.  Have a living will or a durable power of attorney for healthcare in place outlining in detail your wishes.

Let your voice be heard during this debate.  Your elected officials are making decisions that may impact not only the type of care you receive but the amount of care you receive.  Should it really be up to them?

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Welcome to Caregiver Friday!

I read an article yesterday about having those deep discussions about the patient’s desires regarding their medical care.  The items on the checklist include all items on the continuum including end-of-life care.  The suggestion or the point being debated, not sure which it was, was that since families come together for the holidays, this is a good time to have those discussions.  I don’t know about you but I wouldn’t exactly want to say, pass the mashed potatoes and oh by the way would you ever want to be on a respirator.  I do believe there is a time and a place for everything.

I would like to make it clear that I do believe it’s important that the patient have a living will and a durable medical power of attorney.  In most cases, you the caregiver, will the the power of attorney.  It’s for that reason that I do believe that you as the caregiver/wellness partner become assigned the task of making sure these documents get completed.  I know you’re thinking, “sure…one more thing for me to do”.  The truth is that if you have these documents in the long run, should be patient not be able to make their own decisions, it will actually provide you with direction making decision making on the patient’s behalf clear.

I’ve played around with a lot of different methods of approaching these topics with family and friends.  I’m currently the durable power of attorney for medical care for all my family members, my spouse and my best friend.  Instead of bringing up these uncomfortable questions as part of a medical inquisition I am allowing the media to be my point of entry for all discussions.  I watch for news articles, television segments and reported studies so that I can casually bring it up in conversation.  Back when the big news story was the Schiavo case it gave me an opportunity to explore the ideas of withholding food and water.  The questions don’t come out of the blue and the person is engaged in conversation that is stream of consciousness, from the gut.  These answers tend to be how the individual feels without the censors installed instructing him/her on how to make everyone feel less uncomfortable with their illness.

The reason it’s important to have it written down is that if contested in the courts simply stated that you know the person’s wishes won’t suffice.  You can download the forms for your state online and then simply have them notorized.  A copy should be given to the doctor, put in the patient’s chart at the hospital and you, the caregiver/proxy should have a copy.  Everyone does not need an original of the document, copies are fine.

There was a book on leadership and I found a gret quote, “Find people who will tell you the truth and reward them for it.”  Share that quote with the person for whom you’re providing care.  Telling them the truth about the importance of these discussion should be rewarded.  It’s not about you losing hope or believing they’re declining, it’s part of the illness process.  We know that you both have been having these conversations internally from the moment the doctor said, “I’m sorry to tell you…”.    We all have anxiety around our health and when there is a spotlight on it we’re more sensitive.  Bring it out in the open and rid yourself of the high anxiety.  There will most likely be small amounts of anxiety, it comes with the territory.

Save the holiday season for creating warm and loving memories.  Utilize this time for connecting with friends and family.  Allow yourself to experience the joy of the season; it doesn’t have to be related to any specific religion or tradition, but the essence of peace and happiness.  There will be time (in most cases) do take care of the hard questions after the holiday.  It’s not like we’re talking months, but everyone deserves a break from focusing on the illness, think of it as a mini-vacation, just don’t take a vacation from medication and treatment.

I wish you and your family a happy holiday season.  May it be filled with love and laughter.  May you feel connected to others allowing that energy we call love to permeate your soul and fill you up.

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