Our Death-Defying, Death-Denying Society

[TheCommuter]

The following is a psychic reading that will eventually prove accurate with every single person in existence today: we're all going to die.

The fact is that life will end, and how Americans choose to cope with this reality gives us an overall picture of our society's position on death; generally speaking, the American attitude is one of avoidance (Johnson, 2004). Simply put, we live in a death-defying, death-denying society.

According to Gemignani (2011), death in times past was not necessarily less tragic to those who lost loved ones, but death was more prevalent, more public, more visible, and more a natural part of life than it is today. Many generations ago, 'passing away' was an intimate affair where aged people lived and died at home surrounded by family, and the surviving relatives provided the post-mortem care in the immediate hours after death. In modern times, death has neatly been removed from the home as the overwhelming majority of deaths now take place in healthcare institutions such as hospitals and nursing homes.

In 2009, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients' lives - that's more than the budget of the Department of Homeland Security or the Department of Education (CBS News, 2010).

Is the massive amount of money being spent during the final months of life really helping, or are the billions of dollars simply prolonging the inevitable outcome that every person will face?

Countless procedures, medications, treatments, and consults that are ordered during the immediate time frame prior to the end of life end up being futile. Also, many patients and family members want everything humanly possible done to fight off death despite having received a terminal prognosis. This issue is only going to become more widespread as the Baby Boomer generation, which includes a whopping 78 million people, sweeps through the already overburdened healthcare system in the coming decades.

Can the current system be sustained with so many new entrants and so few dollars to spread around?

A national conversation about common issues surrounding death and dying must take place soon. However, in this highly politicized era, I do not envision this happening anytime in the near future. Still, we should make a more heartfelt effort to educate the public on other options such as hospice, palliative care, and private duty nursing. According to CBS News (2010), multiple studies have concluded that most patients and their families are not even familiar with end-of-life options and things like living wills, home hospice and pain management. We must make them aware of all choices and respect their decisions.

Finally, a cultural shift needs to take place regarding our views on death and dying. Until Americans realize that death is a natural part of the circle of life, people will continue to do everything humanly and technologically possible to defy the outcome that every currently living person shall meet.

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[Sun0408, ASN, RN]

Great read as always from the OP, love the articles and thought provoking issues. With that being said, I agree with many here about prolonging death. Many are afraid to die or let their loved ones go. I also agree and have said many times there are worse things than death and I have seen it all to often. Just because we can "do something" doesn't mean we should.. But on the other hand who decides at what age, Dx, etc is worth saving or "doing something" or not.. I think that is a very slippery sloop with dangerous outcomes...

I do think MD's need to buck up and really inform families about the outcomes, and not skirt around the obvious. We have gotten pretty good at knowing who will or wont survive. They write it in their progress notes but wouldn't dare state it to the families. I really admire the docs that are honest; families need the truth not what if's and tx that lead to more issues, pain and complications.

[azhiker96, BSN, RN]

Very true. . .

However, my next statement might be construed as insensitive, but here it is. The patients and families who are fighting the uphill battle to live in the face of terminal prognoses are not the ones footing the bill. If the family personally had to come up with the $150,000+ worth of medical bills to 'have everything done' for 98-year-old grandfather in the ICU for another three weeks with no feasible chance of recovery, I bet they'd be singing a different tune. They've extended quantity of life for an additional three weeks, but the added time did nothing to contribute to quality of life: more tubes, more drips, more comatose state. The inevitable outcome (death) has merely been extended another three weeks.

The Cost of Dying - CBS News

Excellent article and I absolutely agree with allowing families to pay for end of life care beyond palliative care. There is a political problem with trying to accomplish this though because there are groups on opposite sides of the aisle that support providing all the care that we can.

On the Right there are those who hold life to be sacred and something to be preserved at all cost for as long as possible. On the Left are those who argue it's unfair to only allow the rich to have heroic measures which extend life.

I believe it is unkind to provide care which prioritizes quantity of life over quality of life. I've seen patients who are hollow shells, mere vessels for processing nutrients and medications and experiencing fatigue and pain. If someone has the means and desires that experience then more power to them.

I know that often it is families who do not want to accept the inevitability of death. That is where we need to offer sympathy and education to help them come to terms with a real and unavoidable part of the life cycle.

[suetje]

Thank you so much for having the courage to 'tell it like it REALLY is' in our ICUs. We have no idea how much many of our patients suffer because they cannot tell us. They cannot even tell us if they want treatment continued most of the time!!! and our physicians are too chicken to really explain that even though they may have this procedure or surgery, they very likely will NEVER regain their previous level of daily living. This is insane!!! Not only does it ramp up healthcare costs but it does a huge disservice to our patients. I sat down with my husband and SPECIFICALLY wrote in my advance directive exactly what and what not to do. I also created a talk.."What would your family do if?" and listed the reasons why prolonging life, and ignoring quality of life may not be the best option for people. The audience was stunned! Do you think anyone gives solid thought to what life would be ads a quadriplegic? What life would be life with a feeding tube and on a vent? NO. this is taboo discussion. It's time we told people the reality and sinus these things BEFORE and event happens.

[dream'n, BSN, RN]

First time I've read this article although it is from 2012. Thanks Commuter, very well-written and I agree with your OP.

[TheCommuter, BSN, RN]

First time I've read this article although it is from 2012. Thanks Commuter very well-written and I agree with your OP.[/quote']Thank you for your feedback! I really appreciate it.

[calivianya, BSN, RN]

My first time reading as well! Great read.

I think one thing that would help tremendously with costs as well as helping people die with dignity and respect is if families were not allowed to overturn DNR decisions that alert and competent patients make. I cannot tell you how many "DNRs" I have coded, put on a ventilator, run all of the pressors on, put on CRRT, etc... only for the patient to die anyway, when the patient knew he/she was too sick to live and wanted to go, just because the family rescinded the DNR the second the patient went unresponsive. Had yet another one this week. He is so unstable he has ST elevation every time he is even tilted just a little bit in the bed, on 100% FiO2 and ridiculously high vent settings. Has something like ten drips running. Of course, he came into the hospital a DNR/DNI and didn't want any of this done at all.

The ones that wake up while all of this is happening are particularly awful. The ones who look you right in the eyes and have tears running down their faces because they did not want to be on the ventilator, look at you, look down at their restraints and shake their arms violently, and look back at you, really hoping you're going to take those awful things off so they can extubate themselves and just die. And, of course, families are bullying the physicians into writing orders to cut the sedation and pain medicine dramatically down so they can interact with Momma while she is obviously in agony. Yes, let's wake Momma up and make sure she knows exactly what torture we're raining down on her. That sounds like a fabulous idea.

I think we ought to be able to criminally prosecute families who rescind patient DNRs and cause unnecessary suffering. Honestly. If it isn't legal to take an alert and oriented person to your house, tie them down, stick tubes down their throat, and cut them open over and over again against their wills, it shouldn't be legal in the hospital either and the family members should be held accountable when they make these kinds of decisions. I always want to ask these family members if Momma molested them as children or something and that's why they're doing these things to her. It would get me fired, but just maybe for two seconds it would make them think, "Am I torturing Momma against her will? Is that what I really want to do?"

Most are decent people and they just don't understand. However, when four different doctors and sixteen nurses attempting to educate the family that their person is really going to die and we are just prolonging suffering doesn't work because the family is in such denial, we need more resources. The ethics committee just makes recommendations, generally, and is overall powerless. We need a legal presence with the actual power to protect our patients from their family members.

[missmollie, ADN, BSN, RN]

If asked 3 years ago, I would've said that everything should be done to save a patient. I was just starting pre-reqs to complete a respiratory therapist degree. I changed my mind, went into nursing, and my thoughts on this matter have changed.

People don't see what we see, and even if they did the belief that it would not happen to them (special snowflake syndrome) would prevail. As nurses, we're not likely to tell them the truth. Death is a scary subject, and with all the tv shows and "real life" dramas of the ER, people believe that any life can be saved.

Doctors are smart enough, the nurses can spot an issue, CPR is simple. The thought is that if an issue can be spotted, that same issue can be corrected with absolutely no consequence.

And what do we do about the issue? Tough call. I can't blame people for not wanting to die. When I see DNR patients who don't receive food or water because they're DNR...that's not fair.

I think the blame is on both sides. Medical: We don't tell them the truth, but at the same time in LTC they watch loved ones starve because they are "hospice" and not going to make it. Personal: Expectations from fictional tv shows raise the bar. Any CPR ad for certification or information concerning CPR almost guarantees the person comes back with no problems. CPR, it's a miracle.

Things have to change with the medical personnel first, including honest, real answers to questions. Then funding has to change for those who bear no responsibility for cost. There is a cost on a life, even if it's morally wrong to recognize it. Finally, we can't let those at the end of life suffer with lack of food or water. I find this to be just cruel. Perhaps then we could bridge that gap.

It's a very large gap to bridge.

[MunoRN, RN]

My first time reading as well! Great read.

I think one thing that would help tremendously with costs as well as helping people die with dignity and respect is if families were not allowed to overturn DNR decisions that alert and competent patients make. I cannot tell you how many "DNRs" I have coded, put on a ventilator, run all of the pressors on, put on CRRT, etc... only for the patient to die anyway, when the patient knew he/she was too sick to live and wanted to go, just because the family rescinded the DNR the second the patient went unresponsive. Had yet another one this week. He is so unstable he has ST elevation every time he is even tilted just a little bit in the bed, on 100% FiO2 and ridiculously high vent settings. Has something like ten drips running. Of course, he came into the hospital a DNR/DNI and didn't want any of this done at all.

The ones that wake up while all of this is happening are particularly awful. The ones who look you right in the eyes and have tears running down their faces because they did not want to be on the ventilator, look at you, look down at their restraints and shake their arms violently, and look back at you, really hoping you're going to take those awful things off so they can extubate themselves and just die. And, of course, families are bullying the physicians into writing orders to cut the sedation and pain medicine dramatically down so they can interact with Momma while she is obviously in agony. Yes, let's wake Momma up and make sure she knows exactly what torture we're raining down on her. That sounds like a fabulous idea.

I think we ought to be able to criminally prosecute families who rescind patient DNRs and cause unnecessary suffering. Honestly. If it isn't legal to take an alert and oriented person to your house, tie them down, stick tubes down their throat, and cut them open over and over again against their wills, it shouldn't be legal in the hospital either and the family members should be held accountable when they make these kinds of decisions. I always want to ask these family members if Momma molested them as children or something and that's why they're doing these things to her. It would get me fired, but just maybe for two seconds it would make them think, "Am I torturing Momma against her will? Is that what I really want to do?"

Most are decent people and they just don't understand. However, when four different doctors and sixteen nurses attempting to educate the family that their person is really going to die and we are just prolonging suffering doesn't work because the family is in such denial, we need more resources. The ethics committee just makes recommendations, generally, and is overall powerless. We need a legal presence with the actual power to protect our patients from their family members.

It's not really "legal" for a family to go against the patient's stated wishes, legally both the POA and providers are required to follow the patient's stated wishes and can only change the course of care when there is reason to believe doing so would be what the patient wanted.

The problem is that in too many instances we allow the family to go against the patient's wishes, luckily that's never been how it works anywhere that I've worked. If the patient is able to clearly state their wishes given a particular course or progression of an illness and the family tries to change the plan of care after the patient is no longer able to speak for themselves then we just explain to the family that their role is to make sure the patient's wishes are followed, not their own wishes for the patient. If the family persists they are removed as decision makers.

[NursesRmofun, ASN, RN]

I think this goes hand in hand with the article from last week about the way our society treats our elderly. People are disregarded (and often disrespected) after a certain age. We're so afraid of our own mortality that any reminders of it are shipped off to do their dirty dying business elsewhere. Our culture of youth worship has led to a solid chunk of our population dying alone and suffering, and that's a crying shame.

Good on you, OP, I'm glad there are others who feel the same as I do.

Well said.

[MunoRN, RN]

Finally, we can't let those at the end of life suffer with lack of food or water. I find this to be just cruel. Perhaps then we could bridge that gap.

I've never seen a patient who is comfort care or hospice denied food or water, so I'm not really sure what you're referring to. Families who don't understand the normal process of dying sometimes become concerned with a dying person stops eating and drinking and worry that this will lead to suffering. There is research on the subject and it turns out that trying to undo this lack of appetite and thirst through things like tube feeding actually causes far more discomfort (you're putting food into a GI tract that is shutting down) and in many cases can hasten death.

[NursesRmofun, ASN, RN]

I agree. There is that families' desperate desire to hold on to their elderly loved ones, yet few die at home.

[Jensmom7, BSN, RN]

I think the blame is on both sides. Medical: We don't tell them the truth, but at the same time in LTC they watch loved ones starve because they are "hospice" and not going to make it. Personal: Expectations from fictional tv shows raise the bar. Any CPR ad for certification or information concerning CPR almost guarantees the person comes back with no problems. CPR, it's a miracle.

Finally, we can't let those at the end of life suffer with lack of food or water. I find this to be just cruel. .

Ok, a little education seems to be required here, because you have some serious misconceptions about Hospice.

I'm not sure why you put Hospice in quotes, but people aren't just put on Hospice. They are evaluated, the family and patient (if they are able to understand) are given the information they need for an informed consent. It's not a surprise to anyone.

Also, people DO NOT starve in Hospice care. Families are never told that their loved one can't eat. They can actually eat whatever and whenever they want; that's why they're called "pleasure feeds". However, we do caution them that the patient had to be awake enough to follow prompts to chew and swallow. They understand there's a risk of aspiration-that's what Atropine drops and scopolamine patches are for.

The human body is a miraculous machine. As you progress toward death, food is no longer needed for fuel. Matter of fact, as the gut attempts to shut down gradually, being forced to eat can cause nausea, vomiting, pain and diarrhea.

Yes, people do experience a slow dehydration as they decline. It's normal, and also helps the body to shut down. The brain releases endorphins and there is no suffering. Many don't even feel thirsty. Good oral care helps keep the mouth clean and moist.

Decreased food intake is normal, and one of the signs of decline.

It always bothers me when I hear health care professional basically accusing Hospice of torturing people.

Torture is having IV hydration every other week-causes more discomfort and people feel like crap if their body is trying to shut down naturally. And don't get me started on g-tubes for the terminally ill.