Denying Death As A Society

This is not meant to invoke anger or flaming like most of my articles. It is meant to make people think. I do not mean to insult or offend. Death is programmed into all of us. It comes for all of us no matter what. Nurses General Nursing Article

Now mind you this is not directed at the injured or the ones that are just acutely ill.

The tear in the eye, the holding of a hand. The cry to fight harder, live longer. These are the scenes I see every day as an ICU nurse. I can understand these thoughts and even empathize with them in wanting loved ones to live longer and to fight harder, but often these muttered words are for patients that we are denying death to.

The 94 year old lady with multiple bedsores who has dementia and a whole host of medical problems, that any of which, could kill her at any time. The poor old man who has spent the last 20 years in a nursing home unresponsive to any stimuli due to a massive stroke. The heart failure patient who cannot support their own blood pressure, now we have to give harsh drugs and chemicals just to keep their heart beating, not responding in any manner to their loved ones.

These are many of the people that are kept in that state between alive and dead in my ICU. These are the people that death would be a comforting end to their struggles and problems, would bring an end to the pain and suffering they have. But yet, we as a society deny this to these people.

We say keep them alive, do everything possible, save them, Don't you dare let them die. Thirty years ago these people would have been allowed to die with dignity, to have some peace after suffering so much, but now in today's society we cannot allow death to occur. Many feel that we have to keep granny, or great uncle or mamma alive no matter what. Let me tell you something though. YOU ARE NOT DOING THEM A FAVOR!

As nurses we see it every day, people that we know are not going to make it. We talk to the families as healthcare providers and advocates. We tell them the truth, but somehow they still don't listen. They still don't accept the fate that will happen. I am not talking about uneducated people either. Many times these people have very high degrees and are extremely knowledgeable in their fields. Yet they still insist that in the face of contrary evidence and teaching that their family member is going to live no matter what we say or do.

I understand that they love them and are in a state of denial, but many times that state of denial has lasted YEARS. These are patients that have had major life threatening illnesses for many years, and are now getting progressively worse rapidly. Let me tell you, as a nurse and person, it sucks the soul out of us and robs us of our humanity to see this much suffering daily and much of it to no avail, and yet we have to continue it.

Too many times have we seen the cries and anger at us to keep someone alive when the kindest thing would be to let them die peacefully. To let them have dignity in the end, but no, that cannot happen. We all have seen too many TV shows where the person comes in practically dead to the hospital, and the wonderful doctors at the very last minute save the day and the patient walks out into the arms of their happy family. Let me tell you, it does not happen that way.

Here is what is going to happen to you: your family member will be taken to a room in the ICU, we are going to stick many, many needles in the arms and legs of your loved ones, we are going to rob them of their dignity, even though we try not too. People are going to come in and see them undressed, laying there after we stick tubes in literally every body cavity possible. There are going to be tubes going in the bladder, the rectum, the throat, into the nose even. None of these tubes are comfortable, and actually can hurt going in. We will stick IV lines into the neck, the chest even the groin. We are going to give harsh drugs that have massive side effects in the hope of keeping them alive. We will have someone like me, a 6' tall 300 lbs guy crush their chest with almost all of our might when their heart stops. Let me tell you the feel of ribs cracking under our hands is not something easily forgotten.

Great now we saved that 90 year old patient eaten up with cancer, Now let's put a tube poked through their stomach to feed them since they will more than likely never be able to enjoy a meal again. Lets cut the throat and put in a trach. That is a tube so that we can hook them up to a ventilator for the rest of their lives because they cannot breathe on their own anymore. You will never be able to hear them say I love you again.

Let's give drugs that when given long enough, will cause their hands and feet to rot off, or will cause their kidneys to fail. Well we can fix that, lets put a real long line in them so we can do dialysis. Let me tell you, hooked up to that dialysis machine 3-4 hours a day, several days a week is really living. This is just the beginning of what we do.

For all of that above, the outcome is still going to be the same. Death. We can fight it, we can try to stall it, but in the end it will always win. We have stripped away the dignity in dying, we have stripped away what it means to be alive, to love, to live. We see families deny people pain meds because they think they could become addicted or it makes them sleep too much, and lord knows we can't have mamma not totally alert and comfortable at the same time. Even though she has massive tumors all over in her stomach and bones. We can't let them rest or get some peace, we must be constantly touching them , rubbing their arms, talking to them. We can't have peace. We deny that what must be. Death. It is going to come for them. We as medical personnel see that, we try to tell you that, but yet you won't listen. We deny the natural.

We deny death as a society.

denying-death-as-a-society.pdf

It's not a 3 day deal for me... I work in a nursing home with patients who have been there for years. I have also gone through it with both parents and my grandmother, so it's personal for me too. It is NOT easy for you, nor was it easy for me. I was lucky enough to have my mom and dad CHOOSE to let me be there and I found it a miracle as I drove my yearly trip to Florida when my dad died when both my brother and I were there and he made the trip from the Bahamas in time. I walked through the door to visit my mom 1/2 hour before she passed. My Gram decided she didn't want me to see her pass so she did peacefully in the hospital in the middle of the night. It's hard to let go, but if you love them, you let them go when it's time and there is no other compassionate option. It's about what THEY want and everyone reading this should, at the very least, have a difficult discussion with their loved ones, BEFORE they become sick, or even before YOU do! Quality of life is, or should be, an important part of decisions made. Being fed by a feeding tube, or using a tracheotomy to breathe is not a compassionate decision... it's not God's way, like one family told me, to keep someone alive by placing tubes in them. I understand not wanting to let go. I miss my mom, dad and gram every day, but I know it was the right thing to do FOR them! Talking to them, I knew they didn't want extraordinary measures and didn't want to spend the end of their lives in a nursing home. They were also not afraid of death. I have found the older I get the less afraid I am too.

Specializes in Dialysis.
As much as you want us to understand your perspective, we want you to understand ours. To you, she may be your patient.... She may have been admitted for 3 days... She's an 86 year old hispanic female with a hx of chronic renal failure, (dialyzed MWF) hx of CHF, s/p CABG x4 (10 years ago) . You notice the early stages of skin breakdown, she is non verbal... albumin level is awfully low, LFT's elevated...... She is a frequent flyer, with intractable infections, she was brought in via EMS and is now hooked up to a vent... You have known her for 3 days......

But.. She is my grandma...., I have known her my entire life... She raised me... Up until last week she was still full of life, she loves me as much as I love her. I care for her 24/7.... She is independent at home, ambulated without the assistance of a walker, she is able to cook. I accompany her to dialysis 3 times a week where we use those 3-4 hours to talk, crack jokes and watch whatever is on the TV monitor- after dialysis we go to her favorite Restaurant where she orders her usual.. I take her to all her doctors appointments... Cardiologist, Hemotologist, Nephrologist, PCP- I know last week's lab results off the top of my head, I am her historian I can tell you about the appendectomy that she had in 1965- I can tell you that her hemotologist just adjusted her last dose of EPO.... I can tell you that last week I helped her with gardening and she talked about wanting to work on getting her strength up- she wants to beat this..... she wants to feel as strong and as healthy as she possibly can.. she knows shes aging, but she is trying.. I drive her to the healthfood store where she stocks up on her natural Omega fat supplements, her superfoods etc....

But now... It seems that her health has taken a turn for the worse, the pulmonary edema, VRE in her urine, and we are waiting for her stool culture to Rule out C. Diff.... This has happened to her before, and she pulled through it....

But now her hospitalist and social worker come in to drop the bomb on you.... to tell you that she is not going to make it, some of the doctors even have the nerve to ask us why we are "torturing her" they question why we are letting her suffer... They want us to put her on hospice - stop all curative treatments and let her die... No matter how you disguise the words "comfort care" "dying with dignity" all I hear is you telling me you want me to make the decision to stop all medical treatments and let kill her... because that is what will happen.. The hope of her going home, the hope of her getting better.. the hope.. you are taking away my hope..

... Wait.. Maybee the doctors are right, after all they are doctors..... Wait, but maybee they are wrong... again, because the last time they had this conversation with her she bounced back.... She returned home, finished her physical therapy and she had a brand new lease on life.. How can I trust these doctors? I called her PCP that has known her for years, and he tells me that managed care plans always try to do this to patients who they feel are "expensive".. she old, on dialysis, taking a bucket load of meds.. Frequent flyer- Hmmm.. Lets just be cost effective and put her on hospice......

Wow... now im really confused... I feel attacked, this is all too sudden.. I need time to let it soak in.. I need time to make a decision without all these judgemental insensitive jerks pushing me around.. I feel like im being bullied, I feel too much pressure to have to make the decision now.. What if I make the wrong one.. what If I let her go, and maybee she would have recovered... What if... Would I be able to live with myself if I listened to the doctors and let her go- I killed her and I gave up on her.. I give her an opportunity to come back.. I know she's a strong women.. she's a fighter.. let me hold onto hope for just a few more days...

It kills me to see her suffer, it will kill me to see her go....

You are a medical professional... I have brought her to " your place" to help her.... I have brought her to your place to save her life- to prolong her life, to try to avoid death one more time- If I felt the need for advice, I would ask you... Thank you for being upfront and honest about her prognosis.. but this is my person... I know her best, and I know that I am making the right decision for her.. she trusted me with this for a reason... If she pulls through and recovers, she will thank me.. and we will talk about it.. I might have her for another year or 6 months... If she dies in the midst of life saving treatment- I guess it was meant to be.. God wanted her home- At least I know I tried everything in my power to save her, I tried everything in my power to give her a CHANCE to pull through.....

I am very sorry that it hurts or bothers you to see your patient- that you have known for 3 days go through this.. but I ASSURE you it hurts me more... If you find yourself biased- and not in agreement with my choices- please feel free to ask off the case... If you find yourself emotionally attached to my family member, and you want me to let her go- please walk away...

I am bringing her here to keep her from dying... So please do your job...

But advice... is not what im seeking at the moment...

Your's truly,

The Very Confused family member.

I understand your issues, I've been there. But, you brought her for treatment. That is what gives the healthcare team the right to give you "advice"

Wow. I have been on so many sides of this in my career. I've had two nursing home patients in different hospitals who were intubated against their wishes, one because the EMS in that community *routinely* intubated all the "found down" patients they were called for (this was a long time ago), the other because the nursing home conveniently "couldn't find" the patient's DNR orders and she had no family to confirm them (her pastor was POA and out of town). In both cases those were two of the angriest patients I ever saw. The first had her ET tube removed once the doctor saw her paperwork and confirmed with her that she was indeed a DNR; she was pretty much in her right mind and was mad as hell. She lingered for a few days and expired peacefully on the med-surg floor. The other was kept in the ICU on the vent until her doc returned from vacation, which IMO was criminal. I had her the day he returned and she glared at everyone, especially the RT when he came in--such venomous looks! I sang to her when I was in her room, mostly hymns and spirituals, and she softened up a little for me. When the pastor finally came in that afternoon, he asked her if she really wanted to be removed from the vent and if she understood that being removed meant she would not be able to breathe on her own for long and would die. She nodded vigorously. I called the attending, he came in and wrote the orders and the RT came to remove her---and got one more nasty look for his pains, until she realized what he was doing. Once the ET was out, she relaxed for the first time all day. I sang "Steal Away" and she smiled at me and closed her eyes. She died quietly about a half hour later.

When my 91 year old home health patient had what I was almost certain was an MI and refused to go to the hospital, I called her doctor and explained the situation. He wanted her to go to the ER, but she continued to refuse. I explained this to him and he said, "But she'll die!" and I said, "Dr. F, she's 91 years old, and she's tired. I don't think we can *make* her do anything." He was very quiet for a minute and then gave me some orders that made pretty good sense, comfort care, etc. The patient stayed at home and a couple of months later had "the big one" and died in her own bed where she wanted to. I found out a few weeks after the phone call that the doctor was on the list for a liver transplant (Hep C) and so was grappling with his own mortality. I had a number of his terminal patients after that and he was just great with them.

When it was my 91 year old dad with pneumonia, we hospitalized him and did antibiotics and everything, but he was "Do Not Intubate". He was extremely ill but recovered and went home. However, he was very weak and not able to get around. He had dementia, and was so stubborn he wouldn't use a walker, so of course he fell and the home care aide couldn't get him up. It was at that point that we had him put back in the hospital so he could be evaluated for rehab in a SNF. He was placed, but soon refused to cooperate with rehab so we stopped it and let nature take its course and he died of CHF several weeks later. We had made him a DNR before he was place. Lessons were learned! My brother the MD said that in retrospect he didn't think we should have hospitalized him the first time. My other brother disagreed but said we probably should have sent him straight to the SNF. Lessons learned...we kept mom at home with a full-time caregiver until her death 3 years later. She was a DNR, and was on hospice for the final 6 months of her life, and when she got sick the last time (probably aspiration pneumonia) the doctor prescribed PO abx. She took a couple of doses mashed up in pudding but then refused any more PO, and died quietly in her own bed with her namesake granddaughter beside her and the music of her youth playing softly on the radio. My daughter said she was smiling.

I ASSURE you it hurts me more... If you find yourself biased- and not in agreement with my choices- please feel free to ask off the case... If you find yourself emotionally attached to my family member, and you want me to let her go- please walk away...

I am bringing her here to keep her from dying... So please do your job...

But advice... is not what im seeking at the moment...

Your's truly,

The Very Confused family member.

Despite all the advances in medicine and nursing there are plenty of things we cannot fix. Even trying to do so can cause so much more suffering and pain as opposed to "let things go the natural way".

As we become older, our body and mind gets tired and sick. Sometimes healthcare can help but there is a price to pay.

Often times it is the family that cannot let go and tries to hold on but the patient may be the one who suffers in that process.

Just because we have machines, procedures and medications does not mean a person has to go to extremes or use all of it. There is something to be said about comfort at the end of life. To spend the time left as comfortable as possible and not hooked up to machines, in a noisy environment with no peace.

It is a great gift to give to one's loved ones - when there is little hope or no hope - or the suffering outweighs the benefit - to just shift focus and allow for maximum comfort and spend that time left with quality.

Specializes in PCU/Critical Care.

You hit the nail right on the head with this article! BRAVO to you for having the courage to write what some of us nurses are thinking! I'm a Hospice nurse and I more then understand the frustrations of trying to get a family to understand that their loved one is going to die..no matter what they do. The end result is the same. And I love how you paint the picture of what CPR looks like! Great job!

Specializes in icu, er, pcu.

It is a crime-what we do to these dying patients. The family means well, but does not understand the torture we are inflicting on their loved ones. Not just for days either-years and years of suffering. I have been a RN for decades, worked the ICU and ER. I have decided this type of longevity will not be a part of my future. Period.

Thank you for such a thoughtful article. It puts into words what I've been feeling for a long time. After a weekend of especially sad cases, it was therapeutic to read. I've taken care of patients at an LTAC and although I feel that we did our best for them, it was clear that they were suffering but their families could not, for whatever reason, let go.

I now work in med/surg and feel even worse for the families as they don't know what to think, don't know what to hope. If they ask, I'll try to gently explain the situation the best I can. Sometimes they just need someone to listen as their minds begin to sort out all this new, foreign information.

I wish more of the doctors would do a better job explaining and teaching the families. Some are really good, but some give the families no guidance at all.

I've often wondered if family members should be present when we perform these uncomfortable procedures on their loved ones, so that they can have a better understanding of what they're suffering. We put the patient through all sorts of misery but when the family enters the room, we make sure their loved one looks peaceful and comfortable. They don't look under the sheet to see the tubes coming out; they're unaware of the pressure ulcers, etc. In a way, they're clueless and it's not all their fault.

I was a nursing student when my dad started dying..it was a week long process..my nursey brain knew he was dying..the daughter in me did not wish to see this...even though I was counting respiration's etc..finally on day 5 of him being so sick..this man had lived a good life with many illlness..CHF..HepC from a blood transfusion..2 aneurysms repaired by Dr DeBakey in the 70's diabetes..but up until this week of dying..he golfed 4x a week, drove everywhere, out to eat and to casinos, traveled with my Mom..but this week it all came crashing down..he finally agreed for us to call 911..his pressure was bottomed out and off we went to ER..he had NO Advanced Directive..but once his Dr arrived, performed testing..his organs were shutting down..the Dr asked him if he wanted any heroic methods if he coded..my Dad so NO..he had an awful night..morphine did not comfort him..it wasn't until the order for dilaudid came thru that he fell asleep..a sleep he never woke up from..and he passed that Saturday night as soon as we left the hospital at 10 pm...sorry so long winded..but the point of my story is..most patients know when enough is enough..he chose to go as he knew life after this would be tubes, respirators etc...I am thankful he was lucid to make the decision for us..so now I think we should all get busy with our own Advanced Directives...

Please people wake up.... Let your family members die with dignity

The circle of life. We are born and we die. It amazes me that when it comes to our pets the vet says release them of their suffering and euthanize them so they are no longer in pain. But when it comes to our loved ones we will let them live in pain and suffer for our own guilty conscious. Let them die with dignity and be at peace.

Specializes in Critical Care, Transplant..

I believe in ones right to choose to die if they have a 100% incurable, terminal illness (ALS, stage 4 cancer etc.)

Psych conditions should be out of the question. I also believe you should have to have a interdisciplinary team sign off on all the paperwork.

Check out "The Right to Die" episode of Vice on HBO. Very interesting about what is occurring in the Netherlands.

You are absolutely right. This what helped me make my desicion to leave SICU.