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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[Cold Stethoscope]

You've made some interesting points, AKY.

When a Living Will has been established it does not happen in a vacuum. People talk about it. The person who needs to make decsions must be comfortable in carrying out that decision. Health care personnel MUST accept the fact that all of us must die sometime and that is not a failure on the part of the HCP, it just is, as a part of life cycle. No one should be plagued with thoughts similar to my friend, wondering if she did right.

Hospitals are staffed by ordinary people with medical educations, but generally, no specific instruction in end-of-life issues. In a year-long patient advocacy program I participated in, it was a big topic.

Her mother had a living will that was very specific and she did not want life prolonging treatments.

The reality is that a living will is often not followed. If a patient comes to the hospital under emergent circumstances, he's not likely to have the document with him. If it's not already on file at the hospital, in his record, on top, then it's likely that no one at the hospital will know that it exists. Another reality is that a patient's family/proxy can override the patient's wishes. It's legally complex, and I suppose a patient could take his family/proxy member to court if he recovers sufficiently, but in reality, the patient needs to convince his family/proxy a priori to respect his wishes.

So, why did they push her and her very ill mother? I believe it is because most doctors hold on the feeling that death is the enemy. Nurses know that is not true. Discomfort is the enemy.

Doctors seem to operate in two modes. They are "programmed" to try to extend life at almost any cost to the patient and the system, but when the doctor is the end-of-life patient, he tends to eschew heroic lifesaving efforts in his own care — she has good knowledge of what those procedures entail.

[Cold Stethoscope]

I am not so sure that it is a fear of death that drives many to continue against insurmountable odds. I think that many have a genuine sense of hope, something that is many times reinforced through religion.

Hope for a personal miracle, against all odds, even when it's clear to anyone with some medical knowledge that there is no realistic hope of living out the week?

Aggressive end-of-life care more common among faithful: study (CBC, 2009)

"It is not entirely clear why terminally ill patients who report relying more on their religion would choose more life-prolonging medical interventions."-Religion's Impact on End-of-Life Care (WebMD)

Parents' religious beliefs can complicate kids' end-of-life care (myFox Orlando)

Should parents' belief in miracles trump medical expertise in end-of-life decisions? (CBS News)

Might it be a case of hope that stems from fear? Might it be lack of knowledge of biology? Might it be wishful thinking?

As to proxies violating the written will of the patient, that is a legal matter and it depends upon how the patient appointed a proxy, if they did, their living will, and state law.

Violation of the patient's wishes in the direction of more aggressive treatment is not so much a matter of law as it is the de facto reality.

[CrunchRN, ADN, RN]

All of the above as you say cold Stethescope.

But at some point hard decisions have to be made by this country about how much we can invest in that kind of care. And nobody wants to make them unless they and theirs are exempted and all politicians seem to be afraid they will not survive politically if they do.

[TopazLover, BSN, RN]

There are some religions that see life as to be preserved as long as the Higher Power gives ways to prolong that life. Others that see a natural death as something that honors their spiritual beliefs. I personally do not wish for the first case, prolong life at all costs, as long as possible, but I do accept it and perhaps even have a bit of understanding of it.

[Ruby Vee, BSN]

For clarity I am going to respond outside of the quote tree.

As to your first point, the extraordinary measures in the face of insurmountable odds are what many would call keeping hope alive. I personally do not feel that keeping someone on a vent for years who is brain dead is exactly what I would do for my family but those decisions are for the patient/family to decide. As for family overriding the patient's wishes, that is an issue for the court.

As to the second point, I think this is a valid topic but I believe that the decision of providing life supporting care is something that is personal and the decision is driven by one's culture, religion, and personal beliefs.

I have personally found that western culture is not the predominant culture that pushes to extended life preservation but rather those of Native American or foreign origin.

I personally do not believe that the 3^rd party reimbursement system is the most effective system. I do not think that the system fosters the competition and quality of care. Medicare is unsustainable due to the fact that a larger population is/will be utilizing the system compared to the population that supports it. There are many serious problems with Medicare but I will leave that for another thread...

If someone is brain dead, they are dead. Keeping them on a ventilator for years is an enormous waste of money that could be spent on basic health care for every child born in your city over those years. Since the brain dead patient is incapable of making those decisions, they are left to the doctors and the family. Perhaps if the family were paying for the care, the decisions made would b different. Perhaps insurance and medicare benefits should cease when the patient is dead -- brain dead, that is.

[Ruby Vee, BSN]

"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."

Billions of dollars are spent at the end of life , in a fruitless effort to prevent the inevitable. Many more than the dollars spent at the beginning of life.

The only answer is teaching at the doctorate level. Future physicians need to be TAUGHT that their role is not to prolong life.. but to enhance the quality of life of every patient they care for.

Over the years, I've seen that physicians in teaching hospitals do a much poorer job of having end of life discussions than physicians in smaller community hospitals. Perhaps because the teaching hospitals don't TEACH physicians to have these conversations. I've participated in many an end of life discussion that went seriously awry because the physician couldn't bring himself or herself to be blunt or direct. Instead, they talk around the subject of the patient's terminal prognosis, never addressing it directly. They offer endless futile treatments rather than honest advice such as "We've exhausted our options for reversing the disease process; it is time to think about your Mom's comfort. We can keep her comfortable while you gather your family to come and say goodbye to her." And family members, grasping at straws, don't "hear" the terminal prognosis that isn't being directly addressed because they don't want to go there. It's up to us, as health care providers, to go there anyway. And too many of us aren't up to the job.

I've worked in an ICU for three decades, I know that there are worse things than dying. But the average family does not. And unable to visualize something worse than dying, they won't be able to see through the doctor's discomfort with addressing death directly and bring it up themselves. It's difficult enough even when you know as much as we nurses do.

[MunoRN, RN]

I defer to this guy to explain the situation; he says it better than I.

The Dying of the Light

and

http://www.washingtonpost.com/opinions/our-unrealistic-views-of-death-through-a-doctors-eyes/2012/01/31/gIQAeaHpJR_story.html

The shorter version from a fellow ICU Nurse in explaining why she was leaving the ICU; "too much of what we do is morally suspect".

I think that as a society it's totally appropriate to question our culture of denying inevitable death when the only difference we are making compared to the natural process of death is to prolong it and add to the suffering. As a society (for the most part), we believe everyone should have the opportunity have their suffering eased and to improve the quality and potentially quantity of life, when those goals aren't achievable, it's not only appropriate to question that care but should be considered our moral responsibility.

[microtutor]

With all due respect, individuals unrelated to the patients and families have been making certain healthcare decisions for a long time.

You'll notice that people generally do not qualify for major organ transplantation beyond a certain age because individuals who serve on the 'committees' or 'advisory board' decided that a certain subset of the population would not benefit. Likewise, many doctors will not perform high risk surgeries on certain patient populations because of the high risk of the patient dying on the operating table. Insurance companies decide to pay or refuse payment on life-prolonging treatments, so you can say that some insurance administrator out there is making decisions on patients' lives.

Others have been deciding who gets what in the healthcare realm. Physicians, insurance administrators, folks on transplant committees, and others have been gatekeeping the precious medical commodities for years, but people act as if it's something new.

Are people acting as if it is something new, or are they just saying they disagree with it?

I agree with Asystole RN and the others who say this is not right. I don't care who "gatekeeps" healthcare. It should not be gatekept. When we endorse gatekeeping of healthcare - whether it is "because it is what we do", or based on financial concerns, or based on our conception of someone else's quality of life? We are denying individuals and families the right to make their own decisions on treatment.

Doctors consult with patients. They give the facts as best they see them. Patients then decide - aggressive treatment, or not? risky surgery or palliative care? A few more months as "me" or a few more years possibly with no memory? Full code, or DNR? Patients and their doctors and families make these decisions every day, and that's the way it should be, in my view.

If people are making healthcare decisions based on money, whether as patients or as gatekeepers, we need to do something to fix our fiscal problems as a society so this doesn't happen anymore. A lot of people want to say we "can't do that", but I believe we can. The choices our policy makers have made to allow our nation to go unprotected, to ship hundreds of millions of jobs overseas, and to cut vital social programs to the bone while spending close to 4 quadrillion dollars propping up foreign wars and a monetarist system that has been on its way to demise since 1971 are just that - choices.

If people are not adequately educated about their end of life options while they are still young enough to think things through and make some informed decisions, the health care community - particularly doctors - needs to make some changes so people have the information they need.

Also, not sure what all the arguing back and forth about "brain dead" patients is about? Patients who are brain dead are dead. Some become organ donors, all are declared dead after a rigorous workup confirms they are indeed truly brain dead and a certain interval has passed, no? I believe the controversy is more around those who are classified as "chronically vegetative".

[Cold Stethoscope]

All of the above as you say cold Stethescope.

But at some point hard decisions have to be made by this country about how much we can invest in that kind of care. And nobody wants to make them unless they and theirs are exempted and all politicians seem to be afraid they will not survive politically if they do.

When end-of-life counseling (originally a component of the ACA) was characterized as "death panels" by a vice presidential candidate, and when that phrase reverberated through the talk radio/blog echo chamber, it was all over. No-cost (to the client) end-of-life counseling was stricken from the bill.

As a country, we're still not ready to give it serious thought.

The Logic of End-of-Life Counseling by Conor Friedersdorf, Forbes, 1/7/2011

And that's just the before-the-fact counseling aspect.

[tewdles, RN]

As a hospice professional I have observed the "death denial" behavior of health care professionals for some time now.

In my opinion, families and patients often accept the terminal prognosis sooner than the physician does. It is not at all uncommon for a family member or the patient themselves to request hospice services only to have the PCP or medical specialist balk at identifying the patient as "terminal". I will also simply refer folks to the stats that indicate the average length of stay in the USA for a hospice patient...the late referral of terminal patients speaks more to the inability of the managing medical provider to even acknowledge evidence of decline toward death of their patients than it does of death denial in the families. Most families and patients trust their doctors and respect their opinions and recommendations. Families will demand fewer futile interventions when the medical community is honest with them and does not offer them futile options. MDs should not be surprised when their patients with CHF, Diabetes, COPD, etc begin the process of decline! These are chronic debilitating diseases that will contribute to or result in their death at some point.

The traditional medical community is very well educated in diagnosing and treating disease states. They are not so well educated in identifying chronic terminal disease states and then educating the patient toward a "good outcome" that does not include cure but rather focuses on palliation of symptoms. I am accustomed to having medical residents rotate through our hospice program to learn about end of life issues. Among other things, they learn how to speak to people about death, and dying, and end of life goals. I wish I could say that my initiation of these discussions during hospice informational visits was not the first time that these people have heard such language...but it OFTEN is. Too many people have commented to me that I was the first health professional to actually use words such as death and dying. Generally those folks are relieved (not all, but many).

The removal of nurses from the primary care setting has reduced the amount of ongoing education people get about their health status and the goals associated with their needs. WE are the professionals trained to educate and advocate for the patient. IMHO, the education of the patient and family relative to their disease state should be ongoing in the primary care setting...NOT in just the acute care setting (although it should occur there also).

There certainly are cultural and religious foundations to the decisions that people make relative to their end of life or that of a loved one. It is important that we discover what the perspective of the patient and family are and then attempt to reconcile that with excellent, compassionate, ethical care. I find that many times family are making decisions based in fear and misunderstanding. When a patient daughter recently expressed to me her goals for her mother's end of life care I listened intently and then asked her what she thought her mother would want. I followed that by asking her if she was developing this goal to improve her mother's quality of life or to diminish her fears and anxieties about losing her mom. Granted it was a very blunt question, but it made her think, and over the next couple of weeks her opinion evolved as she continued interaction with her mom and the hospice team. She was not offended by my question and actually expressed to the MSW that she appreciated my honesty.

Having said that, I have one family who will want a feeding tube and IVs for their father because the priest advised them that to do otherwise would be counter to their religion. Another who refuses all opiates for a similar reason. Another family doesn't get to make the choices at all, the spiritual leader or eldest male in the religious group makes the decisions. These, however, are the minority of cases in my view.

In terms of miracles, most folks who are hoping for a miracle at end of life are not encouraged to abandon that hope. Miracles do not require intensive intervention on the part of health care staff, they require intervention by God and can occur at anytime...even post mortem.

[mentalicu]

Very good article

[TheCommuter, BSN, RN]

I don't care who "gatekeeps" healthcare. It should not be gatekept. When we endorse gatekeeping of healthcare - whether it is "because it is what we do", or based on financial concerns, or based on our conception of someone else's quality of life? We are denying individuals and families the right to make their own decisions on treatment.

Respectfully, I believe that certain aspects of healthcare should continue to be 'gatekept.' Organ transplantation is one of those aspects.

There's a reason that current smokers typically do not qualify for lung transplantation. There's a reason that current alcoholics do not qualify for liver transplantation. If these members of the patient population have not successfully conquered their addictions, they'll simply destroy the new organs that they have received.

There's a reason that people beyond a certain age will never qualify for major organ transplantation. Statistically, the advanced-age patient will die either during the transplantation or shortly after.

Organs are precious commodities and simply cannot be 'gifted' to anyone who wants them. The number of hearts, lungs, kidneys, livers, etc., is limited and must be 'gatekept.'