End of Life Decision Making

I did not understand your question - could you clarify?

I mean has anyone set up any policy or care pathway to help decide when palliative care begins for the patient and curative medicine ends.

My current experience is that this decision is made by a senior physician and that this brings with it variability.

when to decide if palliative care is warranted, will be per policy of the individual facility.

a few yrs ago, i was invited to serve on a hospice committee in a ltc facility.

this facility assessed steady wt loss, steady and irreversible decline in function, pertinent dx w/comorbidities. obviously if someone has a terminal dx, then the determination is late stage s/s.

yet it is notable that i have met with a number of oncologists, pcp's, who will insist on treating their pts, no matter how futile, right to the very end. it's a downright shame.

even if palliative care allows continuation of curative treatments, there are still many doctors who will not consider this as an option.

in summary, i don't think you will find any definitive pathway in determining need for hospice/palliative care. there are too many variables in considering who is appropriate for these services.

leslie

No one else got any thoughts ???

in my experience when palliative care starts, and what it means for a specific client situation, is strictly an issue between the client/family and the doctor and varies based on the client's desires and the family's wishes and everyone's coping mechanisms - thus the spectrum is very broad..... and is often effected by the education of the client and the family.... and what the family will let the doctor tell the patient....

I worked several years in hospice - the issues and needs are very many - and our perception as caregivers is very different than that of a client going through this personally (carrying a lifetime of coping mechanisms) and of the family (also carrying various coping mechanisms) - we can not impose our idea of what is best for any party.... we can only be available and offer education in teachable moments .... some people need to hang on to hope to the very last, others are comfortable releasing the fight and embracing the process of dying - as the living we have little right to decide what is right of wrong for any individual :)

I have always told my families and clients there is no right or wrong way to go about the dying process - or in how they handle the issues surrounding it - I can only offer the benefit of *my* experience and comfort to them - and hope to be there to capture the teachable moments....

a hospital policy should reflect these issues, imho

b'Shalom

Henaynei

Our hospice has a palliative care practice affiliated with it and the pt's that come on to their service have not necessarily stopped aggressive treatment. The practice is consulted when there are symptoms that need managing. Our hospice sometimes gets these patients after they've been working with palliative care for a year or 2. This is especially true for the children that are working with a palliative care physician. Historically (and understandingly), parents want to be able to do absolutely everything that can be done and try all kinds of experimental treatments to keep that child alive but many times is also needing help with symptoms.

Patients/families, in collaboration with their physicians, have the right to decide the course of their treatment. There is no policy that will change that... nor should there be.

Yet many patients/families/physicians elect to follow rather bizarre paths. As earle58 & henayneiCLNC have pointed out, the long term cure is education... to literally educate the entire population... which is kind of a big job and will probably take awhile. But that is no reason to give up and not try. They say the secret to business is location, location, location. Well, the secret to hospice is education, education, education. Every little bit helps... just keep chipping away.

One suggestion I would make to hospice folks in general... something that would further the cause by scaring people less... would be to stop calling hospice/palliative care "end of life care." That is about as insensitive as it would be for the National Hospice Organization to adopt a skull & cross-bones as their organizational logo... or maybe a guy wearing a hooded black robe and carrying a scythe.

Educating the public will go more smoothly if hospice/palliative care is not represented as a dead end street. No religious doctrine or creed should be promoted, but stopping the overt reference to "end of life" (and everything it implies) would be a big help.

One suggestion I would make to hospice folks in general... something that would further the cause by scaring people less... would be to stop calling hospice/palliative care "end of life care." That is about as insensitive as it would be for the National Hospice Organization to adopt a skull & cross-bones as their organizational logo... or maybe a guy wearing a hooded black robe and carrying a scythe.

Educating the public will go more smoothly if hospice/palliative care is not represented as a dead end street. No religious doctrine or creed should be promoted, but stopping the overt reference to "end of life" (and everything it implies) would be a big help.

I hear what you are saying. I may be wrong but I think that phrase has been used to put the emphasis on LIFE rather than on DYING. Does anyone have an idea for a term could be used that would still convey the essence without being "insensitive"?

And if we do come up with a lovely term...do we really want to use it? Do further euphemisms just pander to our society's discomfort and refusal to deal with the reality of mortality until it slaps us in the face? Does it enable us to cocoon ourselves in denial?

Or, would it be a more positive focus that allows us to reach out and include more folks...to gently take those first steps on a path that will become more intense?

Denial is indeed a problem when it comes to acknowledging the facts of life, and you are quite right in wanting to avoid using a term that encourages it even more.

However, looking at dying process for what it actually is and then using accurate, descriptive terms (as opposed to inappropriately warm & fuzzy terms) when referring to it would be a reasonable approach.

All life transitions "alter" one's life, but they do not "end" life. Dying process is undeniably a "life altering event" (an LAE if you will.) Whether it is a "life ending" event we cannot say for sure, so we have no business calling it that.

Dying process contains the same phases or stages as other life transitions, so if you want to know how a person will handle their own death, look at how they have handled all the other transitions in their life. Everyone develops their own life transition coping style.

When I used to interview new or prospective hospice patients I would engage them in what they thought was just friendly conversation. Actually, I was quizzing them about the major events in their life (transitions) and how they dealt with them. That told me how they would likely deal with their dying transition... and what I should prepare for.

Traditional science holds that we do not know if there is life after death because it cannot be proven... but then again, neither can it be disproved. At the very least then, hospice should be neutral. However, calling hospice care "end of life care" is anything but neutral, it reveals a clear bias... and unfortunately, that bias can taint the nature of the care provided.

One of the most profound existential questions facing every human is whether or not 'I' will survive death. Prior to arriving at that point we are wont to hypothesize and intellectualize about it, but when face to face with it the issue becomes overwhelmingly, preeminently and terrifyingly REAL.

It has also been my experience that, all things being equal, people handle dying better when they assume life goes on. In other words, that assumption tends to make people more comfortable. Therefore, since palliative care is comfort care... and we know that people tend to be more comfortable when assuming life is continuous... why in the world should we say or do anything to discourage that assumption?

In addition to which, cutting-edge scientists in the fields of quantum physics and the study of consciousness now tell us that this 3-dimensional universe is an illusion. Years ago Albert Einstein said, "The world is an illusion, albeit a very persistent one." Further studies have taken that much farther. Renowned physicists Fred Alan Wolf and John Hagelin travel the world speaking on this subject, and they tell us the physical universe is a manifestation of what they call "unified consciousness" (of which we humans are a part by the way.)

So assuming that life (consciousness, not bodies) goes on is not "unscientific" at all. Quite the contrary, it reflects cutting-edge scientific thought and encourages more graceful dying processes.

All of which makes referring to hospice care as "end of life care" even more inappropriate.

I think we all agree that the absolute key to hospice is education, so why frighten away the very people we are trying to buoy up by using terms we do not know to be factual? That, it seems to me, is a clear case of shooting one's self in one's own foot.

i understand what aimee and req_read are saying.

as a society, we live our lives negating our mortality; youth & beauty are revered; and our elderly are literally cast aside and deemed worthless, unwanted. so to call end-of-life-care anything but, would merely serve to sugarcoat the reality of what hospice does. while we encourage living with one's terminality, we do so in hopes of assuring our pts & loved ones, that s/he will leave this earth w/relative ease. where we go after here, remains to be seen. but it is indeed the end of our physical life here. end of life care would then seem appropriate.

i wish people would read michael holme's trilogy of books: crossing the creek; key elements of transitions; dying to know.

his books speak of untapped spiritual energies and dimensions, that we all possess here and when we die, there.

if we were truly in touch with our spiritual side, death would not be seen as something to fear but rather, a transition from here to 'there'.

and so, knowing that people need to believe there is some sort of afterlife, i find that i can share my spirituality with my pts; non-threatening, very fluid. not a religious sermon at all. just 1:1 conversations that are substantial and comforting.

end of life care.

that's what we do.

leslie

It has also been my experience that, all things being equal, people handle dying better when they assume life goes on. In other words, that assumption tends to make people more comfortable. Therefore, since palliative care is comfort care... and we know that people tend to be more comfortable when assuming life is continuous... why in the world should we say or do anything to discourage that assumption?

Some people believe in life after death, others don't. You can't assume that that belief is a comfort for your pt.

If there was ever a time to keep one's personal beliefs out of one's practice, it is certainly when dealing with dying patients.

However, looking at dying process for what it actually is and then using accurate, descriptive terms (as opposed to inappropriately warm & fuzzy terms) when referring to it would be a reasonable approach.

I've never been keen on the END part of end of life care either, but, as Leslie states, its what we do. Its the end of our BODILY existence, whether or not we continue to exist in some other form or plane. I'm open to hearing other options for nomenclature. I'm guessing the subject has been debated ad nauseum around boardroom tables for some time. While its imperfect, at the moment I can't come up with a better term.

I have met many people who steadfastly believed that they would be singing in an eternal heavenly choir in that next existence and yet that did not seem to make one iota of difference in their readiness to go join it. Conversely, there have been many who believed that once they took their last breath, that was it, and yet, were peaceful and ready, calm and accepting. The same can be said of their families.

I think there are two things that do make a difference. The first is the ability to relinquish the illusion of control over circumstances that are beyond us and accept it over those things we can influence...our own minds, emotions, and relationships with others. The second is tending to unfinished business, whether that be relationships, finances, life accomplishments or whatever.