OT: End of life, Family conflict, damned if you do and if you don't, thought?

[54ny77]

If anything, this thread is a wake-up call to get one's affairs in order so stuff like this never happens when the golden years come to a close.

[Jeff N.]

Originally Posted by 54ny77

If anything, this thread is a wake-up call to get one's affairs in order so stuff like this never happens when the golden years come to a close.

Abso-freakin'-lootly. NO CODE!!!

[unterhausen]

it's really tough when these things actually happen. My dad suffered from Parkinson's with dementia for the last 5 years of his life, and he was barely ever awake towards the end. He would have lasted quite some time with only a slightly elevated standard of care. But none of us were really prepared to just let him die, which was no doubt the best thing for him. He got pneumonia and died from that. My sister was pretty upset that it wasn't treated. Trying to convince my wife and kids to kill me when I get to that point is tricky.

[Tony T]

Originally Posted by Jeff N.

As an R.N. for 36 years, 10 years spent as an ICU R.N., I've seen this kind of situation far too many times: a do-gooder family member who insists on everything being done to keep their "loved one" alive and suffering when the prognosis is extremely poor at best.
We used to call it, "whipping a dead horse" behind closed doors.

Seems a bit insensitive to me.
Also not sure why you have "loved one" in quotes.

[Tony T]

Originally Posted by 54ny77

If anything, this thread is a wake-up call to get one's affairs in order so stuff like this never happens when the golden years come to a close.

The patient did have his affairs in order. He had a living will and a doctors directive and a health care proxy.
In this case (if I understand correctly), the proxy is overriding what was indicated in the doctors directive.

So, even if one does have their affairs in order, things may not go as expected.

[Chris]

Originally Posted by Tony T

Seems a bit insensitive to me.
Also not sure why you have "loved one" in quotes.

I don't think it's insensitive at all. You see the worst sides of people in these situations. People committed to essentially torturing a person so that they don't have to deal with the death of their family member. Once you've been subjected to that kind of abject selfishness over and over it gets to be a pretty discouraging perspective of mankind. I feel for the original poster.

[Tony T]

In this case, the patient has a directive in writing that he does not want a feeding tube, so I see the proxy not acting responsibly.
If a patient does not have that directive and is uncommunicative, it's tough for the proxy to make the decision to withhold feeding (I would not characterize this as selfishness). Is starving to death less torturous? I don't know the answer to that. AFAIK, the only way to lessen the pain and hasten the inevitable is with morphine. It would be better if this country did not have laws that made end of life decisions difficult.

A timely OpEd in the NYT today: First, Sex Ed. Then Death Ed.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

[93legendti]

^

The issue is one of medical ethics, of which I am somewhat familiar as my Uncle has lectured on medical ethics and the Nazis all over the world.

He was also a class mate of the notorious Dr. Kevorkian, with whom he vehemently disagreed.

It is not as simple (or cut and dry) as it has been portrayed in this thread.

https://reachmd.com/programs/clinici...i-regime/2720/

[Jeff N.]

Originally Posted by Chris

I don't think it's insensitive at all. You see the worst sides of people in these situations. People committed to essentially torturing a person so that they don't have to deal with the death of their family member. Once you've been subjected to that kind of abject selfishness over and over it gets to be a pretty discouraging perspective of mankind. I feel for the original poster.

Agreed. Thanks. Death, in the cases we're talking about, is a reward and relief...the end of unbelievable suffering. I, too, feel for the original poster.

[Tony T]

You realize you just agreed with a post that agreed with your post.
I realize that doctors and nurses deal with sickness and death on a daily basis, so I understand how it may be easy to see every family member that is going though a difficult time as "selfish" and also making the doctors and nurse jobs more difficult (yes, if would be easier if they just did what the professionals suggest), but to lump them all together as do-gooder family members and saying behind closed doors that they are "whipping a dead horse" is at a minimum insensitive to what the family of your patients are going through.

[Aaron O]

Originally Posted by 93legendti

^

The issue is one of medical ethics, of which I am somewhat familiar as my Uncle has lectured on medical ethics and the Nazis all over the world.

He was also a class mate of the notorious Dr. Kevorkian, with whom he vehemently disagreed.

It is not as simple (or cut and dry) as it has been portrayed in this thread.

https://reachmd.com/programs/clinici...i-regime/2720/

I think it's pretty simple to categorically reject your attempted comparison of a eugenics based death tribunal with hospital staff and family members attempting to ease pain and follow the dictates of living wills.

[Jeff N.]

Originally Posted by Tony T

You realize you just agreed with a post that agreed with your post.
I realize that doctors and nurses deal with sickness and death on a daily basis, so I understand how it may be easy to see every family member that is going though a difficult time as "selfish" and also making the doctors and nurse jobs more difficult (yes, if would be easier if they just did what the professionals suggest), but to lump them all together as do-gooder family members and saying behind closed doors that they are "whipping a dead horse" is at a minimum insensitive to what the family of your patients are going through.

"Do gooder family member"=the legally responsible family member thinking they're doing the right thing by insisting everything be done to keep the dying patient alive when the prognosis is extremely poor, making the other family members feel guilty for seeing things otherwise. "Beating a dead horse"=insisting, again, that everything be done in spite of the OBVIOUS SUFFERING that the dying patient is going through and there is ZERO possibility of survival. The terms may seem insensitive, and maybe they even are...but the terms are EXACTLY what it is. Palliative care should come into play. And if you're implying that suggesting palliative care is a way of making the job of MD's/RN's easier in these cases...well...I must STRONGLY disagree, Sir.

[54ny77]

I worked alot with a palliative care nurse in connection with a dying family member.

She was an angel.

The best, most gracious person and perfect for the situation.

She used to be an ER nurse for many years in a high pressure location and decided to make a career/practice switch.

I am thankful for the skilled person we dealt with in that profession, as was my family.

Originally Posted by Jeff N.

"Do gooder family member"=the legally responsible family member thinking they're doing the right thing by insisting everything be done to keep the dying patient alive when the prognosis is extremely poor, making the other family members feel guilty for seeing things otherwise. "Beating a dead horse"=insisting, again, that everything be done in spite of the OBVIOUS SUFFERING that the dying patient is going through and there is ZERO possibility of survival. The terms may seem insensitive, and maybe they even are...but that's EXACTLY what it is. Palliative care should come into play. And if you're implying that suggesting palliative care is a way of making the job of MD's/RN's easier in these cases...well...I must STRONGLY disagree, Sir.

[Chris]

Originally Posted by Tony T

You realize you just agreed with a post that agreed with your post.
I realize that doctors and nurses deal with sickness and death on a daily basis, so I understand how it may be easy to see every family member that is going though a difficult time as "selfish" and also making the doctors and nurse jobs more difficult (yes, if would be easier if they just did what the professionals suggest), but to lump them all together as do-gooder family members and saying behind closed doors that they are "whipping a dead horse" is at a minimum insensitive to what the family of your patients are going through.

That's not what was meant and anyone reading this thread with the intent of give and take knows that. The simple point is that, at times like this, there are plenty of options to care for the patient other than the "do everything" approach that is often so tied to the West's fear of death. Comfort measures only (palliative care) and Hospice are excellent and very caring approaches for both the patient and their family.

[BuddyB]

This is a difficult situation and I hope you and your family knows that there is no correct answer.

I have treated many patients in similar situations as your Father-in -Law and based upon what your are describing he seems to be receiving palliative care. The IV fluids and antibiotics will help keep your FIL comfortable, but will not stop or slow the disease process which resulted in his DNI/DNR orders.

I would strongly suggest that your family request a consult with the hospital's Palliative Care Team and listen very carefully to information that is being provided and work with them to develop plan of care for your father in law. If the hospital doesn't have a Palliative Team then ask to for the Nurse Navigator and ask the nurse for help.

The problem with DNR for patient's that are terminally ill is that loved ones expect the sick family member to die from the disease directly, such as cancer, AIDS, etc. not from an indirect cause like an infection. Often families have a hard time connecting the dots and feel as though the current problem cannot be related to the terminal illness, so they feel empowered to ignore the DNR orders. I would suggest doing some research and reading on how patients with dementia leave this life.

I would encourage you to talk to your wife and brother and law and ask them how they envision their dad passing - this insight may help you understand the current conflict.

Best of Luck

Buddy B