Discussing End of Life Issues Part 2 - Living to a Ripe Old Age

[tnbutterfly - Mary, BSN]

the case for killing granny

i just saw this article in newsweek magazine. the title was enough to grab my attention. this is a very hot topic in the news today. health care issues pertaining to our elderly should always be important to us. we all hope to live to a ripe old age......or do we? with all the discussion about rationing health care to elderly, death panels, etc....... where is this all leading? what is the nurse's role? again, as i said in part 1 of this blog, "one of the primary roles of the nurse is that of patient advocate. nurses need to be prepared to advocate for the patient when conflicts arise between the patient's wishes and the wishes of the physician and/or family members," and, i might add....the wishes of the insurance company, who sometimes seem to have the biggest say. this becomes even more important as we deal with elderly patients who face these end-of-life challenges.

the idea that we might ration health care to seniors (or anyone else) is political anathema. politicians do not dare breathe the r word, lest they be accused—however wrongly—of trying to pull the plug on grandma. but the need to spend less money on the elderly at the end of life is the elephant in the room in the health-reform debate.

but how do you decide which treatments to cut out? how do you choose between the necessary and the unnecessary?

this article also talks about the psychological aspect of health care.

the desire to see a physician is often pronounced in assisted-living facilities. old people, far from their families in our mobile, atomized society, depend on their doctors for care and reassurance.

it is important "get patients to talk to their doctors about how they want to deal with death". and it is important that these wishes be honored, as closely as is appropriate and in the best interest of the patient.

studies show that about 70 percent of people want to die at home—but that about half die in hospitals.

our medical system does everything it can to encourage hope. and american health care has been near miraculous—the envy of the world—in its capacity to develop new lifesaving and life-enhancing treatments. but death can be delayed only so long, and sometimes the wait is grim and degrading. the hospice ideal recognized that for many people, quiet and dignity—and loving care and good painkillers—are really what's called for.

in all of the discussions about health care for the elderly, i hope we all remember the needs of the patient should always be kept in the forefront. our goal should be to show compassion and mercy as we strive to maintain the patient's dignity, treating them with the care that we would desire to receive in our final days.

who is responsible for discussing end-of-life treatment options? (part 1)

[nursemike, ASN, RN]

I saw this article on the internet. Catchy title, but misleading. The author described his grandmother being aggressively treated for end-stage emphysema when her wish was just to go quietly. Nothing at all to do with "killing Granny." The issue was whether Granny had the right to refuse treatment, which she clearly did. Opponents of health care reform want to make this an issue of rationing care and "death panels," but end-of-life counselling is no more than telling people what their rights are, and it's hard to see how that can be wrong.

I think it's true that a lot of the expense in healthcare comes at the end of life. A patient admitted for a simple hip fracture dies in the ICU. A patient with a terminal brain tumor goes for Gamma knife. A post-op CABG codes. Heroic measures aren't cheap. But before we worry about denying these measures to those who want them, it seems reasonable to me to make sure we aren't forcing them upon those who don't. And I count as "forcing" withholding information that would allow them to know their options and the likely outcomes of such measures.

Despite the article, I haven't seen us doing a bad job of end-of-life counselling as it is. At my facility, and I assume most others, patients are given every opportunity to write advanced directives. Every patient admitted is offered the chance, and those who wish them are assisted in filling them out, if they so desire. Patients who are able to consent are given their options before heroic measures are undertaken. The few times I've seen anything like the article's author described with his grandmother have been driven by patients' families, usually in the form of persuading the patient to accept care they would otherwise refuse. I suppose an argument could be made that we don't go far enough in encouraging people to discuss their advanced directives with their families, but it isn't hard to understand why families avoid that discussion. As my father's MPOA, I know his wishes, and as a nurse I know enough about the realities to have the fortitude to respect his wishes. But we've never really discussed my wishes. He isn't ready to face the possibility that I could go first.

I guess I'm going to have to trust my cats to make that call, if the time comes.

I think it's unfortunate that some politicians and media pundits have chosen to complicate an issue that should be a no-brainer.

[tewdles, RN]

I would have to respectfully disagree...I do not think that overall we do a "good job" of discussing end of life with people. My experience is that primary physicians are not ingeneral comfortable with that topic. Often people are hearing these things from a physician in the hospital setting with who they may have only a short term relationship. Their "hearing" is often complicated and diminished by stress, acute illness or significant change in their chronic disease. The primary physicians seem reluctant to have these discussions unless the person is almost literally "at deaths door", which leaves little time for meaningful discussion and planning. Families who have members in the health industry are often proactive about making these decisions in advance even when it has not been a topic initiated by the PCP. My family is like that. Had my mother waited for her PCP (with whom she had a very close relationship) to bring up the topics she would have been a full code and she would never have been referred to hospice. He apparently could not bring himself to have these conversations with her. Most families, however, do not have a plethora of health professionals at their dinner tables. The DEPEND upon us to provide them with the information that they NEED to make informed decisions about their options for end of life and death and dying. Families avoid this discussion often because the PCP is more comfortable with that approach. It is much easier to ignore the fact that Mr. Smith has end stage CHF and to NOT meet with him AND his wife, or his adult child to explain progression and options than it is be to proactive and have those difficult discussions. I have worked with internists who know their patient is in the last couple years of their life and yet they continue to procrastinate those discussions until the family is dealing with the terminal decline and the need to make care choices. While there are families who can never get past the need to "do everything", there are soooo many who can and will make very compassionate, thoughtful choices if they are but given the chance to reflect. We can do better.

[86toronado, BSN, RN]

Wow, great responses so far.

I can only add that I agree with the notion that the families need to be included in the discussions regarding end of life care. I work in neurology so maybe I see it a little more than some, but lately I have had several patients who are being kept alive: on feeding tubes, vents, and in one case; aggressive chemotherapy not because they wish for it, but because their family is holding out hope that they may recover. These patients are unable to speak for themselves, and never had the discussion with their families about what they wanted. So they are now stuck in a hospital, spending their last days or weeks being fed parentally, in a strange room with a strange nurse coming in ever hour to suction out the tube in their throat, turn them, clean them, empty their catheter, all the while seeing the look in their eyes that says that they would rather be left alone to die peacefully.

[ayla2004, ASN, RN]

i feel strongly that this issue is often not disscussed unless with cancer patients and then not even.

why the fact that people will die espcailly if they have life limiting illness i don't

know.

Agreeed very often dath/sying in aonly disscuss weeks/day before it occurs.

there are measure in the UK to help people plan better. Why aren't people reffered to pallative care sooner (hospice in the UK referres to a chairty run inpatient unit. why because no one asks and no one offers.

in area of the uk 2 ideas are being trialled the gold stanard frame for pallative/end of life care which is menat to be iniated ealry so that people can make choices and get to know the care givers sooner rather than in crisis

mode. This nicley UK want to die at home but most die in acute care.

The Gold stanard framework promote the use of advanced directives which are kept at home and with the GP.

The example i was given was that a young man app 17 had had cancer been treated went into remssion and can back after baqttleing eh has let his mum know what he wanted. if he became weak etc no hospital wanted to die at home and he did.

age of consent in the uk is often 16 and children have say in their care if consider competent.

We have pallative care nurses and commuinyt nurses who pop in chek the familly ok i remeber visiting pt was ca lung gentleman wish was to die at home with familly. he wasn,t dieing just yet but he knew his gp/community nurse were looking out for him and if it came to if would do end of life care.

[kanzi monkey]

before we worry about denying these measures to those who want them, it seems reasonable to me to make sure we aren't forcing them upon those who don't. And I count as "forcing" withholding information that would allow them to know their options and the likely outcomes of such measures.

I think it's unfortunate that some politicians and media pundits have chosen to complicate an issue that should be a no-brainer.

Very well said.

[tnbutterfly - Mary, BSN]

opponents of health care reform want to make this an issue of rationing care and "death panels," but end-of-life counselling is no more than telling people what their rights are, and it's hard to see how that can be wrong.

you are right......it is telling them what their rights are. but it is also educating them...and their family....what their options are.

i think it's true that a lot of the expense in healthcare comes at the end of life. a patient admitted for a simple hip fracture dies in the icu. a patient with a terminal brain tumor goes for gamma knife. a post-op cabg codes. heroic measures aren't cheap. but before we worry about denying these measures to those who want them, it seems reasonable to me to make sure we aren't forcing them upon those who don't. and i count as "forcing" withholding information that would allow them to know their options and the likely outcomes of such measures.

i totally agree with this. i think that they have a right to make an informed decision about their options.

despite the article, i haven't seen us doing a bad job of end-of-life counselling as it is. at my facility, and i assume most others, patients are given every opportunity to write advanced directives. every patient admitted is offered the chance, and those who wish them are assisted in filling them out, if they so desire. patients who are able to consent are given their options before heroic measures are undertaken. the few times i've seen anything like the article's author described with his grandmother have been driven by patients' families, usually in the form of persuading the patient to accept care they would otherwise refuse. i suppose an argument could be made that we don't go far enough in encouraging people to discuss their advanced directives with their families, but it isn't hard to understand why families avoid that discussion. as my father's mpoa, i know his wishes, and as a nurse i know enough about the realities to have the fortitude to respect his wishes. but we've never really discussed my wishes. he isn't ready to face the possibility that i could go first.

i guess i'm going to have to trust my cats to make that call, if the time comes.

while i agree, each patient is given the opportunity to fill out advanced directives upon admission, how much information are they given about the various options available, including the possible outcomes.

yes....many times family members complicate the issue, either by not wanting to discuss these end of life issues beforehand, or failing to honor the patient's wishes at the last minute.

i think it's unfortunate that some politicians and media pundits have chosen to complicate an issue that should be a no-brainer.

thanks for your comments.

[tnbutterfly - Mary, BSN]

i would have to respectfully disagree...i do not think that overall we do a "good job" of discussing end of life with people. my experience is that primary physicians are not ingeneral comfortable with that topic. often people are hearing these things from a physician in the hospital setting with who they may have only a short term relationship. their "hearing" is often complicated and diminished by stress, acute illness or significant change in their chronic disease. the primary physicians seem reluctant to have these discussions unless the person is almost literally "at deaths door", which leaves little time for meaningful discussion and planning.

i think you are very much on target with this. many doctors are uncomfortable discussing end of life issues with patients. doctors are far more comfortable talking about treatment to "save" lives rather than treatment which will allow for a peaceful death. many times these discussions come at such a late time in the illness process and from a person whom the patient does not know and may not trust.

families who have members in the health industry are often proactive about making these decisions in advance even when it has not been a topic initiated by the pcp. my family is like that. had my mother waited for her pcp (with whom she had a very close relationship) to bring up the topics she would have been a full code and she would never have been referred to hospice. he apparently could not bring himself to have these conversations with her. most families, however, do not have a plethora of health professionals at their dinner tables. the depend upon us to provide them with the information that they need to make informed decisions about their options for end of life and death and dying. families avoid this discussion often because the pcp is more comfortable with that approach. it is much easier to ignore the fact that mr. smith has end stage chf and to not meet with him and his wife, or his adult child to explain progression and options than it is be to proactive and have those difficult discussions. i have worked with internists who know their patient is in the last couple years of their life and yet they continue to procrastinate those discussions until the family is dealing with the terminal decline and the need to make care choices. while there are families who can never get past the need to "do everything", there are soooo many who can and will make very compassionate, thoughtful choices if they are but given the chance to reflect. we can do better.

yes, our patients need us to advocate for them. we need to encourage end of life discussions with the doctor. we need to be the ones to step up to the plate to help the patient and the family have realistic expectations based on an understanding of the state of their health and options available. we need to help families not feel guilty for wanting to forgo painful treatments but instead pursue a peaceful death for their loved ones.

[shrinky]

Amazing responses and it could not be answered better. I find the greatest barrier to referrals to our Palliative Care program are surgeons and cardiologists. Surprisingly the Nephrologists and Oncologist refer most often. It is difficult to even get a referral from them when the family is struggeling to make decisions for the dying patient. We could be of help in presenting the picture and options so they can make the best decision for their family member who is on the vent and unable to wean off, who is 90 years old and riddled with cancer and does not want anything to be done. I had one MD call me to tell me that he needed to talk with the patient and family about DNR but didn't know how to approach them so asked for my help. So many physicians are unable to "give up" as they see it and call PC or Hospice, they really feel as though they have failed. We are trying to educate them about this very topic, but it is hard. I have discussed my wishes with my family and made a living will, but so many of our patients have not done this and then there are those with terminal illnesses who want everything done and so need education, but from who? That is another part of our role but I hesitate to overstep a docs' toes unless I am called in on consult. I think I have digressed, but at my age I can afford it. Good thread, great .com.

[tnbutterfly - Mary, BSN]

i find the greatest barrier to referrals to our palliative care program are surgeons and cardiologists.

we could be of help in presenting the picture and options so they can make the best decision for their family member who is on the vent and unable to wean off, who is 90 years old and riddled with cancer and does not want anything to be done.

so many physicians are unable to "give up" as they see it and call pc or hospice, they really feel as though they have failed. we are trying to educate them about this very topic, but it is hard. i have discussed my wishes with my family and made a living will, but so many of our patients have not done this and then there are those with terminal illnesses who want everything done and so need education, but from who? that is another part of our role but i hesitate to overstep a docs' toes unless i am called in on consult.

excellent comments!

here is another article that expresses similar thoughts regarding doctors' hesitancy in talking about dying for fear it will take away a patient's hope because they think the doctor has given up.

doctor and patient: talking often and calmly about dying

in retrospect, i don't know if john wanted all that we did to him because we never had that conversation. john's admission to the hospital had set the health care train rolling; and neither i nor the other physicians had the time, support or courage to think about putting the brakes on long enough to find out what john wanted. we were too afraid of taking away john's hope and believed that if we mentioned death, he would believe we had given up.

as someone who has written an entire book about the difficulties of caring well for the dying, i find all the fury aimed at halting support of end-of-life care discussions more than a little ironic. why? because the truth is that most of us need all the help we can get to start these difficult conversations. the truth is that we never talk or even want to think about talking about dying because we are afraid of dashing our loved one's or our patient's hopes. the truth is that we fear-even abhor-these discussions because we believe that by talking about dying we are giving up.

but these discussions affect everyone involved, especially those left behind. it helps families make decisions that they can live with. it is much easier for family members to make a decision based on what they know their loved one wants, rather than guessing and anguishing. that is why it is so important to have these discussions while the patient is able...physically and mentally.

......patients are not the only ones who benefit. discussions about end-of-life care can be beneficial for survivors, especially after their loved one's death. "these conversations affect how patients die; and the way patients die affects how their family members adjust to loss," dr. prigerson noted. "end-of-life care conversations are not just acute, time-limited events. they should be repeated and they appear to have enduring consequences."

while the timing and appropriateness of these discussions should be considered in each individual case, talking about end-of-life care "doesn't inhibit or prohibit patient choices. instead patients will be more likely to make better informed decisions and to get the kind of care they want. and physicians will have an idea of their patients' preferences, regardless of what those preferences are."

[LethaChristina]

I was listening to a long-time neighbor's story about her husband's dying process not long ago. Neither of them were even told the husband had aggressive and all-over cancer--not at all until after he had died; he was subjected to frequent paracenteses (eventually the fluid was "black", as described by my neighbor), and twice-to-thrice/day doctors' office visits up until the very end (how in the world does any rational doctor justify this--when the man can hardly move or breathe--and the wife is obliged to "carry" him into the office?) It was an incredible mess--and not at all dignified and peaceful! My heart just bled for her... who still carries wounds of not being allowed to know or plan appropriately. You know, after all I have seen as a nurse--and heard (all kinds of people tell me all sorts of things)... is it any wonder I have a lingering cynicism about medicine--and got out!