FRONTLINE: Facing Death. End of Life decisions

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Frontline: Facing Death Nov 23, 2010. Mt. Sinai NYC

"How far would you go to sustain the life of someone you love, or your own? When the moment comes, and you're confronted with the prospect of "pulling the plug," do you know how you'll respond?

In Facing Death, FRONTLINE gains extraordinary access to The Mount Sinai Medical Center, one of New York's biggest hospitals, to take a closer measure of today's complicated end-of-life decisions. In this intimate, groundbreaking film, doctors, patients and families speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice

Read more: http://www.pbs.org/wgbh/pages/frontline/facing-death/#ixzz1KlfBXnLb


http://www.pbs.org/wgbh/pages/frontline/facing-death/

"Nobody wants to die...and nobody wants to die badly."

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20 replies. Join the discussion

martzj,

This is a subject near and dear - my mother died of lung cancer fairly recently. She broke her hip - just shattered the bone - on a Friday and we agreed to surgery if only to reduce the excruciating pain. Surgery goes ok and Mom rallies for 1 day but then becomes very non-responsive for the next day. Rallies early Tuesday but by mid-day is clearly on the final decline - cannot breathe, communicate, etc. VERY obvious it is not the surgery but the lungs failing. But Mom is in the Orthopedic ward - so when the Ortho doc (not the original surgeon) does rounds - we've never met him, mind you - he wants to do some extraordinary measures.

When I protest - that is NOT what she wants - at this point Mom is barely 65 pounds and hasn't eaten much since 4 months prior - he actually says "What kind of daughter are you?! She will die! " The nurses are SHOCKED at his vehemence and KNOW what my mother wants. So when I hold firm even as I am crying continuously and explain that it is NOT what I want but what SHE wants that is important right now, he says to the nurses "ok, then prepare her for transport to a rehab facility" WHICH will KILL her she is that close to death.

So they agree to a transport time of 2 hours away to get rid of the doctor; then they move it to 4 hours away for some unspecified "medical" reason; then they finally get ahold of the hospice director who totally agrees that Mom is hours from death and finds some hole in the wall room for us in the renal department. We tell Mom that all 8 kids are on their way and to hang on til she can hear them all. The last kid comes in from DC at like 2 AM and Mom passes 1 hour later.

The doctor was a complete axx and I did report him to the hospital board. He actually complained that she was in an ortho bed - not that she was in a ortho ward but the actual bed itself. I said "I can show you 6 empty rooms on this floor for a total of 12 empty beds; she will be dead before you need this bed."

The nurses on the other hand were great - those in hospice were the best ever - they totally prepared the renal folks - "just check once an hour unless family needs something". They let all of us plus our sig others plus the grandkids all pile into the room for the 5 hours or so it took. We also took over the waiting room for the area for the most part - there must have been 35 of us. We stayed out of their way for the most part since we had a couple of people in the family who are medically trained. They did the morphine but let us handle the oxygen and the rest.

Totally grateful for the positive aspects of the experience but LC is a horrible way to die. Not sure there is a good way.

Funny thing, the doc's office sent a ridiculous bill (in excess of the Medicare charge)for the pleasure of his company that day after she had passed. Unbelievable!! Didn't pay it - I figured when the Hospital Board did their investigation he would be "paid".

JG

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JG: First I am so sorry for your loss. Your profound love for your mother is so clear in your story. You must have had a very special relationship that will live on forever. I hope you keep telling your story because we can learn so much from it.

My sister is a hospice nurse who works as the intake coordinator. She is the one who gets the call when someone is going on hospice and she makes sure the patient's and families wishes/needs are being met. When she was visiting me last week, she told me she will probably become the pediatric specialist for her county. I have INCREDIBLE respect and admiration for what she does. We've have many long conversations about this topic.

My story about loss is about when my husband was dying of cancer. He was 43. A surgeon stated there was no hope but a doctor in oncology was trying to push aggressive chemo even though everyone agreed chemo did not work on my husband's cancer. I would have fought like you had to, JG, but on his 6th night in the hospital I was sent home by the nurses. The only place for me to stay had been a chemo chair that was wheeled into my husband's room. When I went home, I immediately went to sleep. A short time later I was awoken by a light coming in one of my windows. It was blue/white, like nothing I had even seen before. Way brighter than the sun, but not piercing. It came in the room like a beam and first touched my feet and slowly enveloped me like a paste. I NEVER felt so good in my life. I am a speaker and writer and there is no word in the English language that describes how good I felt. I remember asking myself, "who am I and where am I?" With perfect vision, I looked across the room (my glasses were on the bedside table behind me and I'm BLIND without them). With perfect vision, I saw family photos in tiny porcelain frames and that's how I realized who/where I was. I looked to the other side of the room and it was pitch black. The second window in the same room showed a black night sky. (I had wooden shutters and swags in that room, leaving a gap between the two where you could see outside.) After a time I finally lay back down and that's when the phone rang and it was the hospital to say my husband was gone.

I share that story from the platform, if it's appropriate to the message. People ask me "what was that? Jesus? God? An angel?" I don't know and I know I'm not supposed to know. It's like God said "put out your hand" and in that hand he placed a single grain of sugar. And then he said, "taste that. That's what sweetness tastes like." Then if you compare that taste of a single grain of sugar with all the sugar that's ever been produced by man, which is what heaven is like. At least I've had a taste and it's a good one.

We and the medical community view death as a failure. It's actually a significant part of our life and we could do it so much better.
Thanks for sharing that link. Rudy

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To all, you must make sure you have taken appropriate "legal steps" to insure you will die with dignity. My husband and I have Do Not Resusitate Orders that we take to the hospital everytime we go in for a procedure. Many hospitals only honor these if they are current / they may have one from 5 months ago, and you changed your mind. the power ofthe government is overwhelming, and can take over what your wishes are. You have to have someone responsible for you. I thought that if my husband and I wrote this information into our will we wouldn't have a problem - not so. You have to execute a separate living will which we did, and had witnessed and notarized.

It's very complicated and varies from state to state.

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Rudy,

I am so glad you told that story, as I am for Jetgirl's story. I can't agree more. Beautiful.

Love, Mary

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I watched the Frontline video. Amazing! I am in a commited relationship but not married. I thought for sure that he understood my thoughts on critical care. I WAS WRONG! We just found out that we are pregnant and with that comes some very serious risks. So we had a very long conversation last night about different scenarios and what I would want. We both will be getting a living will done very soon.

This really made me think about how far do I want to take things. How do you make that decision? Of course I don't want to die, but I don't want to suffer either.

Again, thank you for posting this. Probably one of the best posts I have seen in awhile!

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JG,

My heart goes out to you and your family. Your story is deeply, deeply moving.

What the ortho was doing is coined 'Medicare vulturing".......The flurry of specialists that hear a patient is near death and show up to sign on as 'consult' so they can get in a hefty Medicare fee. They rush to get in on the profit gravy train before a patient goes to hospice....as many as 20 or more doctors will enter their name as a consult within hours.

I'm sorry you have to deal with that instead of focusing on your last moments with your mother.

My condolences JG,
Jaynie

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shirleycool,

I LOVE that kitty on laptop pix....Many fond memories of kitty impromptu 'additions' to me texting!

Good for you both. You can name each other as 'health care proxy'. Look into Advance Directive forms too. The more documents with your names listed as 'proxy' the better your chances of being able to stay fully involved in each other's bedside care and decisions.

These discussions are so important because family members and significant others may be afraid to actually tell a loved one the truth about what they want. (Example: the man who kept telling his girlfriend he didn't want rescucitative action but had told his sister (proxy) he did want whatever it took to hang on.)

Jaynie

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JuiceR,

RE: DNR's

Mom had a DNR drawn up by a lawyer that had a date within the previous 90 days - the hospital limit - which we brought with us to the ER. Her at-home nurses were from this SAME hospital and also gave the DNR to the EMT's who came to the house. In addition, since the ER staff were having some sort of problem accepting her DNR - I had her sign the hospital's version within the first hour at the ER.

The nurses in ortho, who had been working with us since the surgery on Saturday, were well informed on what she wanted since she had spoken to them directly during her lucid moments. The nursing supervisor had spoken about this with her when it first seemed that she would not recover.

It remains completely inexplicable why an ortho doc would ask for extraordinary measures and berate me when I refused on her behalf when DNR was written in HUGE letters on her chart. One of my doc friends said what may have been going on was that Ortho did not want her death in their stats. Seems a little cynical but possibly true.


On a related subject, Mayo Clinic would not accept my Advance Directive (also drawn up by a lawyer) when I checked in last July. I found it rather odd but then expected that I would sign a Minnesota version. Nope, they didn't want ANY thing on file and told both my husband (in the waiting room) and me in pre-op that they WOULD use extraordinary measures regardless of my wishes. At that point, what was I going to say " I am going home" - 2000 miles ! Fortunately we didn't have to test it :)

JG

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JG,

"It remains completely inexplicable why an ortho doc would ask for extraordinary measures and berate me when I refused on her behalf when DNR was written in HUGE letters on her chart. One of my doc friends said what may have been going on was that Ortho did not want her death in their stats. Seems a little cynical but possibly true."

Unfortunately, sometimes all the directives by a patient are overridden. The best one can do is get documents created and kept up to date. DNRs are often stuck on a refrigerator door w magnet...EMTs know to look for it there.


"On a related subject, Mayo Clinic would not accept my Advance Directive (also drawn up by a lawyer) when I checked in last July. I found it rather odd but then expected that I would sign a Minnesota version. Nope, they didn't want ANY thing on file and told both my husband (in the waiting room) and me in pre-op that they WOULD use extraordinary measures regardless of my wishes. At that point, what was I going to say " I am going home" - 2000 miles ! Fortunately we didn't have to test it :) "

Good to know.

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"One of my doc friends said what may have been going on was that Ortho did not want her death in their stats."

My sister, the hospice intake coordinator, talks about these stats alot. She said docs will squeeze in every last bit of care, knowing the patient will not recover, and then as soon as death is "imminent" hospice gets an urgent admission. By the time hospice assumes responsibility for a patient they only have hours to live but the death would be "counted" as a hospice case. That patient could have been receiving comfort care and their family also would have had support for days or months before.

With my husband, hospice was never mentioned. Unfortunately it was before my sister worked in that specialty and at the time she was dealing with a horrible death in her own family, so my kids, who were 10 and 12, never got to see their dad after he was rushed to the hospital 10 days earlier. This became a huge issue as they dealt with his death over the next years. The only thing that kept us "whole" was a strong faith and close family. Had we not had those two things, the impact of the kids not being able to say goodbye could have resulted in significant bad choices in their teen years.

Jaynie, thanks so much for sharing that link. Rudy

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Martj and all.

There is a document called a living will, that anyone facing serious medical illness should consider filling out and having on file. One copy for your loved ones and one given to the Doctors. It is a simple form, you have it notorized and then it is there if it is needed. Most insurance companies can send you this document for your loved one to fill out. It is hard but at least then your loved ones wishes have a better chance of being followed. I am in the process of filling one out since I was diagnosed with stage 4 cancer of unknown origin. Even though my husband and I are on the same page we both looked at this as something that needs to be done.

Cathy

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Dear Cathy,

It is saddening to hear your news of stage 4 cancer. I hope carefully writing your wishes about care will give you and your husband some peace.

Many caring hugs to you Cathy,
Jaynie

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Hi Jaynie,

About Mayo not accepting advanced directives: The hospital I worked for in Illinois had a rule in place that when someone is on the operating table, they will do resuscitation regardless of advanced directives. I guess this is a fairly universal rule in most hospitals. I never quite understood why. I think they require patients (or family) to sign a release pre-op that indicates they agree to this.

Again, I don't know why! I can try to find out. But I know it isn't just Mayo. This is just my suspicion so take it for what it's worth: it might be that surgeons and hospitals do not want people dying in the OR because it affects their statistics. A high number of deaths in the OR might precipitate an investigation by a regulatory agency...the Joint Commision on Health Care something-or-other. Can't remember their exact name...everyone knows it as "Jay-co." They put fear into hospital administrators hearts whenever they check them out.

Again I'll try to find out about this. Or perhaps someone else knows why this is?
Jan

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Hi Jetgirl--
I'm reading this post and replies with great interest, as I've spent my past 30 years as a hospice RN. In my state, we have a form that is state-generated and is the "be all and end all" in DNR documentation. It's called the POLST form-- meaning Physicians Orders for Life Sustaining Treatment. Other forms include Living Wills, Advanced Directives, and durable powers of attorney for medical decisions. There are probably some more that I've not heard of yet...
The various documents are important for different reasons.
POLST: Directs emergency personnel (docs, nurses, EMTS, paramedics) as to whether or not to start CPR, insert feeding tube, start antibiotics,transport to hospital and/or other measures, as written in by the person or their proxy. The physician and patient or proxy sign the form. The patient can always change their mind if their situation changes. An example of the use of this form is: A patient with terminal cancer (or any other terminal illness) wishes to NOT have CPR, or perhaps antibiotic treatment or oxygen at the time when they are dying in earnest- actively dying. Or it could be used in hospital when a person with end-stage cardiac disease wishes to not be resuscitated or have a feeding tube if their condition declines to the point where those treatments might be considered. It might come in handy if a person collapses in the street and is carrying their form in their purse or wallet. IT IS PRIMARILY FOR EMERGENCY USE.
Advanced Directive: Is a document drawn up by a person and their "durable power of attorney" for medical decisions-- often a family member or close friend or clergyperson, for instance. It is often drawn up by an attorney, and is usually notarized. The directives can be similar to the POLST, with the addition of other directives that have to do with things like- wanting to die at home, perhaps wanting "the whole nine yards" in terms of resuscitation, a careful outline of a program of dietary trial/when to abandon feeding/eating. ETC, ETC, ETC. It might also direct that people around the bedside of an unconscious person direct their speech toward the patient as though they can hear, or express that certain people are not allowed to be at the bedside. It is NOT an emergency situation doctor's order. The doc has NOTHING to do with this form, other than keeping it on file in the patient's chart. It is used in the medical arena when a patient can't speak for themselves, or if it can clear up any confusions.
Living Wills: Is an older term that refers to a document drawn up, usually, by a person and their proxy decision maker. It often outlines the kind of care a person would want under certain circumstances, as well as the people they'd like to do certain things when they are unable. Because Living Wills are often drawn up without legal or medical advice, they can be too vague or difficult for just anyone to interpret.
Durable Power of Attorney for health care decisions: A legal document, giving a certain person or people the power to make healthcare decisions for someone who is unable to speak, perhaps because of unconsciousness or brain damage. It is important to realize that this does NOT give the P-O-A any control over financial decisions- that's another separate Power of Attorney -- for financial decisions.

Most hospice programs in my state require folks to do the POLST form, so that, in an emergent situation, the nurses, doctors and medics know what to do immediately. It is a legally binding document.
Doctors offices and other medical venues offer the POLST form to all patients to sign, explaining that in an unforseen emergency, this form can make the difference between life and death. (or death and life.)
Really, the important thing is that those NOT wanting some part of standard emergency treatment outline what it is they DON'T want, so as to avoid the brutality of resuscitation or intubation or a lengthy futile ICU event.
Those who don't sign a POLST form get all emergency treatment (including CPR, transport to hospital, probable admission to ICU, emergency surgery, intubation/respirator, antibiotics, you name it..)

I hope this gives you a deeper understanding of what options are available. Be aware that different states have different laws about this stuff. My own chart contains both my Advanced Directives and my POLST directives, despite the fact that my durable power of attorney for health care decisions is my RN husband who knows it all inside and out. After all, he may not be reachable at the time of my big emergency.
I encourage us all to consider doing what we can to ensure the humane and appropriate care we desire.
Ask your physician, hospital,lawyer or hospice program to give you the forms you need. Many states now have the POLST form available to order online as well.
Best of health and quality of life to you!
Melissa.

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Jaynie

Thanks for the hugs. I plan on beating this cancer stuff, but as you know it helps to be prepared. I think anyone who has had a life threatening illness has learned we need to dot our i's and cross our t's. Going into things with our eyes wide open is better than stumbling around in the dark. Sometimes I think I must of not gotten enough schooling and the good Lord has decided I need to incrase my knowlege, first heart disease and now cancer. Hmm maybe I should go back to school and become a Dr. Ya think? I'd only be 60 when I got done. But I do enjoy all of the posts I read and have learned many helpful things. So life is good. Again thanks.

Cathy

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First off JG, I'm sorry to hear about your mom. My grandpa didn't want any life saving measures taken on him...however in the end he had appendicitis, and the decision to do surgery was deemed by me and my dad (the witness and backup witness). My dad questions his decision to this day because it prolonged his death by weeks. I think its harder to be the ones left behind. That doc should have never done what he did to you, very unprofessional. My best wishes and hugs to you and your family.

I know every state is a little different. In Idaho we do not accept DNR or Comfort One's. We (EMT's) do however ask for a POST. I'm almost sure no one in here lives in Idaho so I wont go into detail but here is a pdf on post with links. http://www.teamiha.org/Documents/IHANews/post.pdf

Martzj...I'm an EMT and have been since 2001. Unfortunately until POST came out I had never been taught or did I know about putting the DNR in the fridge. Its not required on any of our tests so its up to each and every station to inform their EMT's about it. I only knew about it when someone mentioned how in the "old days" people put them in their fridges. I'm so young so I get a kick out of the "olden days" stories :)

We ask people to put a POST band on or print POST on their Medic Alert bracelet so we know to look or ask for one. My orders and protocols state I have to start medical treatment (CPR or whatever is needed) until someone can show me the signed documents.

There also was a paragraph in the pdf I posted about the signing doc might not have rights at the hospital the person goes to so its not a valid document. They have "verbally" accepted this as a non issue and that it is to be a valid document. Its weird going from one state to another with a pt in an ambulance....does the DNR order stand when we cross an imaginary line? We all have to use our judgment out there.

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Hey brady678,

Thanks for posting the Idaho link. You never know who might need that.

" had never been taught or did I know about putting the DNR in the fridge."
Well, in North Carolina and Virginia, DNRs are stuck ON the frig door (smile). And instructions are printed on neon color paper. No way to miss that. Maybe it's just a southern thing huh.

As I understand it, a DNR belongs to the person no matter where that person is carried or what doctor is attending. There is no way to ensure things go perfectly every time. We just do the best we can in any given situation. I'm guessing your job requires a lot of swift calls and intense activity, steady nerves. DNR persons are mostly at home or already in hospital settings, so it should be easy to check each home refrigerator door as a matter of course. That puts EMTs in the tough position of assessing whether to honor the DNR and leave or intervene. People in end of life status may not be able with survive the rough handling and bumpy ride to a health care facility.

'appendicitis'....I hope you have reassured your dad that surgery was completely justifiable even if grandad was comatose. It would have been inhumane for doctors to allow that to progress beyond rupture and necrotic systemic decompensation. Understandable that your family very much wanted to spare him that common surgery at that stage.

Bet you are one good EMT!
Jaynie

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"A high number of deaths in the OR might precipitate an investigation by a regulatory agency...the Joint Commision on Health Care something..."

These are often unfair comparisons because a Trauma 1 hospital takes on the worst of the worst and can be expected to have a much higher mortality rate than Trauma 2 facilities.

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Hei Martzj,

we both, my husband and me have written down our last will since years. The copy of it has our son. It must have an new signature every second year, otherwise it is not valid.

Spring greetings from Germany.

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Hi Mirjami,

Happy spring to you too! Good to hear people have options for protective documents outside the United States.

Happy gardening. I spent a long day outside enjoying the annual spring gardening cleanup! Always a precious time for me...this weather window that is cool enough just long enough to get good planting and mulching done. And I heard tiny chirps coming from one of my little birdhouses......the third year in a row the same birds have nested in that house!! yippeee!!

Jaynie

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