Hospice vs Palliative care

@Roberta,

Quote:

When you're too weak or too tired to continue hanging on

I waver on this from day to day or perhaps more accurately, from hour to hour.

@dyslexia,

dyslexia wrote:

no doubt I'm bungling up what I mean to say here but taking a stab at it anyway; receiving Hospice is in a very real sense receiving permission to die, there is, at least in my mind, some sort of social expectation that a good person will fight on with all effort possible to avoid dying, that expectation is a great stress in itself so, having permission to die is a major stress relief in itself.

I am very glad that it is a major stress relief for you.

0 Replies

@dyslexia,

dyslexia wrote:

I seem to be fixated of the "guilt for dying" thing today but as I think more about it there really does seem to be some thinking that allowing oneself to die is a moral weakness which equates to "suffering is a positive sign of strength" perhaps I'm reacting to the nasty wind blowing today, that always seems to get me down.

I am very intrigued by that.

I suppose because I have never really thought of such a thing.....of dying as a moral weakness, and goodness entailing fighting to the last gasp.

I can see that for a parent with vulnerable children. And, of course, when you are deeply loved, it is hard to leave people behind...but, I dunno, I guess I am so used to death and its capriciousness and inevitability that I had never considered a moral angle to accepting it.

In fact, I find that whole metaphor of fighting cancer, for instance, a strange one.

I am reflecting on the suffering thing as maybe coming from deeply embedded christian culture ? I mean the sort that is "bred in the bone", not in the brain?

I hope the wind changes, too.

1 Reply

@dlowan,

Quote:

In fact, I find that whole metaphor of fighting cancer, for instance, a strange one.

In the case of cancer, I think that there is a real value to "fighting" the disease. I am convinced that there is a huge emotional component to cancer, which can somewhat influence the outcome. On the other hand, when I was dealing with cancer, not only did I discuss dying, but even picked my own tombstone.

I have never thought of dying as a guilt inducing act, in terms of my own death. I perceive it simply as the end portion of the life cycle. Since I am not of the Christian tradition, and have no expectations of an afterlife, I have no perception of dying as some sort of moral inadequacy.

One of my strongest beliefs is that immortality consists of the things that you have left behind you. If you have changed one life for the better, if people remember you as someone who brightened their lives, that is a positive immortality. We have seen this quite clearly on A2K in the deaths of a number of our members.

Most of us were never like Einstein, or Beethoven in our days here on earth, but that does not matter. However we have changed the world, whether in great or tiny ways, is our legacy to civilization.

1 Reply

@Phoenix32890,

like I told the doc on thursday, "My soul is in my eyes, when my eyes are closed, so is my soul"

0 Replies

My grandfather died from bowel cancer. We were having a converation about how to sharpen scissors and he said to me "I never knew it was so hard to die". I was only about 17 or 18. I'd never thought about dieing before then or if i had it was more in terms of you have no choice.

I think dieing takes an enormous amount of mental strength, possibly wisdom as well.
The wisdom and strength required to know when its time to refuse treatment and what kinds of treatment to refuse staggers me.

In a way, to me at least, accepting the variouse elderly support systems available like retirement villages, hospice or pallitive care shows some kind of respect for those who have to put up with my decay.

I wish i had your wisdom and strenght Mr Dyslexia. Guess i'll just have to muddle throuh the way I am though.

1 Reply

@dadpad,

you bring up a major complication. one can, when rational, make solid judgments re self-determination of life but then reality sets in when rationality is most needed. for whatever cause, one loses his/her capacity for rationality and continues an existence one would rationally choose not to continue.It's a double bind. "I would not rationally chose to live under these conditions but I am not able to rationally choose any alternative" One easily ends up exactly where one would never want to be. It's a poser for sure.

2 Replies

@dyslexia,

Agree. It's one thing to decide what we are willing to endure - now. Our viewpoint might well change somewhere down the road.

What are you doing up at this time of night? I never thought of you as an evening person.

0 Replies

@dyslexia,

Quote:

"I would not rationally chose to live under these conditions but I am not able to rationally choose any alternative"

That is exactly why it is imperative that each person has a health care surrogate, a DNR, and a power of attorney for the incompetent person. This needs to be done before the time that the person becomes incompetent, and the person who holds the power of attorney needs to be someone that the other trusts completely.

During a serious illness, their are many actions that one could or could not take that would impact on the very life of the person. The two people need to have frank discussions beforehand about what each one wants before one of them becomes seriously incompetent.

In the caregivers' group that I facilitate, I meet many people whose significant others are at the point in their illness where they are unable to care for their most private personal needs, let alone make life/death decisions.

1 Reply

@dyslexia,

dyslexia wrote:

another though most peeps don't know about, think about if you want water or not in the final stages, a drink of water can postpone natural death by hours/days; painful hours/days.

This was our experience with MIL. She was in hospice but also in a nursing home. Nursing home staff disagreed with hospice regarding administering food and drink and pushed both on MIL. My husband also thought giving her sustenance was the right thing to do. Her end of life was lengthened by at least two months as a result.

I would recommend that you put as much in writing about what you want as possible.

0 Replies

@Phoenix32890,

But doesn't thirst cause terrible suffering? Or does thirst shut down?

0 Replies

@dyslexia,

dyslexia wrote:

Quote:
When you're too weak or too tired to continue hanging on
I waver on this from day to day or perhaps more accurately, from hour to hour.

Having no medical knowledge to impart have at least a small example that holds throughout recorded history: in all cases where someone was made prisoner and was due to get tortured to death the next day (in many cultures a well-attended public spectacle) some devoted slave with a knife would try to slip through and kill the prisoner quickly, or the prisoner's family would bribe the guards to get a fast-acting poison to him. It spared the prisoner lengthy torture; to my knowledge the church didn't consider such acts as either murders or suicides. Of course the sequence of events was known with certainty then and that doesn't necessarily apply now. At any rate the "no heroic measures" to prolong life, as was requested by the late Pope, does have church approval.

There is only one case I ever heard of where a prisoner declined, a French aristocrat imprisoned at the Bastille and condemned to be broken on the wheel the next day, which would have meant disgrace, loss of rank and privileges to his family in addition of course to unspeakable torture for him. He refused to drink the poison his relatives had brought - can't now remember his name, or why he said no. Hope this little historical appercu helped with perspective Smile

0 Replies

repeating myself because I think the issue is of vital importance; both Lady Diane and myself have attorney generated legal documentation of DO NOT RESUSCITATE medical powers of attorney signed and registered with the probate court yet should Emergency Medical Assistance (EMT whatever) be called they will attempt resuscitation regardless of our intent (with proper legal documentation) this is an obvious contradiction in our legal/medical protocols that I believe must be addressed ASAP. (but most likely will not be)

2 Replies

@dyslexia,

Are you sure? I was staying at a house in Boston once when an elderly visitor collapsed and when EMT arrived and asked the lady of the house if they should attempt to resuscitate, she said "no" and that was the end of that. I only arrived at the house while they were carrying him off on a covered stretcher and asked what was going on so they told me, and told me also the lady had signed a confirmation form they always kept handy for such situations. She did have a power of attorney for him, and she had to produce a copy at some later stage, but for the EMT crew her unsupported word was obviously enough.

1 Reply

@dyslexia,

Well, this is a catch 22, dys, as you possibly cannot ask of your loved ones
to wait and not call EMA, they would call and rightfully so. That's one reason
none of my family members are chosen to decide if to resuscitate or not.
It's a terrible burden on all involved, but I don't want that my family has to
burden themselves with second thoughts later on.

0 Replies

@High Seas,

I believe that the laws vary from state to state. For instance, in Florida, a person must be resuscitated UNLESS he has a DNR which can be shown to the EMTs or hospital personnel.

P.S. Just Googled "Do not Resuscitate". I discovered that all states have different laws. Each person would have to check on the laws in his state, as well as have a living will and power of attorney drawn up in his/her state. Some states will accept a DNR written by a health care surrogate, while others need a doctor to sign a DNR.

1 Reply

@Phoenix32890,

Having the legal papers drawn up in the state that you are in is especially important if you live in more than one place.For instance, in Florida, there are many "snowbirds", who live up north, and come down south for the winter.

I know that when I moved down here, I was advised to have legal papers (including wills) drawn up in Florida, even if I had done them in my former state.

I really don't know if you need to make two wills if you live part time in two places, but it seems that a POA, health care surrogate, and DNR would have to be written in the state that you are in.

0 Replies

just going by the posts here on this issue it's clear that the issue is not clear at all and that's the problem as I see it. there is very little public knowledge of law/policy/protocol leaving a large majority of people unknowing what their specific situation is and quite likely thinking they have their own personal resolution when in fact they don't.

0 Replies

Here are the requirements for California and I have my DNR with 2 physicians who signed (while a notary was present) to uphold my wishes.

Quote:

The Prehospital Do Not Resuscitate (DNR) Form must be signed by the patient or by an appropriate surrogate
decisionmaker if the patient is unable to make or communicate informed health care decisions. The surrogate should be
the patient’s legal representative (e.g., a health care agent, a court-appointed conservator, a spouse or other family
member) if one exists. The patient’s physician must also sign the form, affirming that the patient/surrogate has given
informed consent to the DNR instruction.

The first copy of the form should be retained by the patient. The completed form (or the approved wrist or neck medallion
– see below) must be readily available to EMS personnel in order for the DNR instruction to be honored. Resuscitation
attempts may be initiated until the form (or medallion) is presented and the identity of the patient is confirmed.

The second copy of the form should be retained by the physician and made part of the patient’s permanent medical
record.

The third copy of the form may be used by the patient to order an optional wrist or neck medallion inscribed with the
words “DO NOT RESUSCITATE-EMS.” The Medic Alert Foundation (1-888-755-1448, 2323 Colorado Avenue,
Turlock, CA 95381) is an EMS Authority-approved supplier of medallions, which will be issued only upon receipt of a
properly completed Prehospital Do Not Resuscitate (DNR) Form (together with an enrollment form and the appropriate
fee). Although optional, use of a wrist or neck medallion facilitates prompt identification of a patient, avoids the problem
of lost or misplaced forms, and is strongly encouraged.

0 Replies

In New Mexico DNR (Do Not Resuscitate) forms applicable to EMS/EMT etc are available from the New Mexico Department of Health.

0 Replies

Hospice vs Palliative care

Related Topics

Quick Links

My Account

able2know