When should hospice discussion begin?

  1. note: i originally posted this in the critical care section with some reads and no responses so i posted here. thanks!

    i am a nursing student (pre-licensure bsn) and have been impressed by the critical care nurses i've been around but also disturbed by some of the patients i've seen. some patients are clearly sustained by technology far past what makes sense. it seems that they are subjected to the remainder of their life being in pain and extreme discomfort. often, it seems that the patient is ready to go, but the family is unwilling to let go. i am wondering what experienced nurses believe would help in this regard. my thoughts are that some mechanism should be in place to have an open discussion with the family and/or patient about death and/or hospice care on admittance to the unit. i'm not sure how to do this, but many patients admitted to a ccu or icu are in a position where death (or at least a severely diminished quality of life) is a real possibility. death is not always a terrible alternative, especially when people understand how hospice can help make dying as dignified and comfortable as possible. i am a little biased as i am doing my senior rotation in a hospice setting. looking forward to your thoughts!

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  3. by   ErinS
    Remember the death panels everyone panicked about? The panic was that doctors would have incentive to discuss end of life decisions. In my opinion, that is when end of life discussions should start- when a pt is healthy, decision making, and able to have a calm discussion with the medical personnel that knows them best.

    If that is not an option, than I think end of life discussions should be started any time someone has a life threatening illness. This is not best done by hospice, but by a palliative team consult that knows all the options, including hospice. The sooner a family or pt is thinking about these decisions, the more sure they can feel the decisions they make. Unfortunately, research shows many doctors are uncomfortable with these discussions, and feel that their pts and families will feel like they are 'giving up'.
  4. by   bsnanat2
    I agree with what you posted Erin S, and I am finding this out. I think even in this forum, people do not want to discuss it. Thanks for your input. Looking forward to others.
  5. by   tgrosz
    bsnanat2, doesn't look like you got much of a response here but
    you raise a very good question and your observation with ccu/icu
    patients is spot on, many would be better served to be sent home
    with their families with hospice care. how to get there?????
    come on hospice nurses/administrators, let's toss this around
  6. by   bsnanat2
    thanks for the reply. no, it seems that people, including nurses, are really not ready or willing to have this discussion. after having spent a lot of time at hospice in my last rotation, the consensus i got was that most medical professionals feel that hope is so paramount that it trumps even the practical. i don't have the experience necessary to agree or disagree with this, but i do know that hope is important. i also know the extreme peace that can come from hospice services. i'll be looking for the proper way to include advocacy for hospice in my practice. again, the real question is 'when does one transition from the "hope" model to the "benefits of hospice" model.'
  7. by   VivaLasViejas
    I'm not a hospice nurse, just a DON in an assisted living facility as well as a consultant to one of our sister communities; and IMO the best time to have "the talk"about end-of-life issues is ten years before you think you'll need help.

    While that may be an unrealistic goal for most people, it's nothing short of negligence for healthcare professionals to ignore EOL issues and avoid discussing them with our patients just because we're uncomfortable with the topic. We see death and dying every day; why are so many of us so reluctant to bring it up when a patient is obviously declining and s/he says, "I'm done"?

    When a resident says to me, "I'm tired of going to the hospital, I'm tired of hurting, I just want to be in an easier place".......that's when I call everybody in and lay the cards on the table. No one wants to hear that their loved one is preparing to leave this earth, but hospice isn't only for people who are literally on their deathbed. It's for those who value quality of life over quantity, and who want to die in their own way, on their own terms.

    It makes me sad when I see people who could benefit so much from hospice services wait until it's almost too late. In fact, many patients and families miss out on the very best hospice has to offer because they wait until the last week or two of life when symptoms are out of control, pressure ulcers are forming, pain and anxiety are interfering with ADLs, and spiritual distress is overwhelming them.

    I know that popular misconceptions about hospice are hard to dispel; almost everybody who comes to me for advice on the subject tells me "well, I thought hospice meant you couldn't get antibiotics for a UTI or a blood transfusion if you need one" or "that's just for people who have six months or less to live". Although the PCP has to certify the probability that the resident/patient is within 6 months of death, I've had residents in my facility who were on service for TWO YEARS before they finally passed; in the meantime, there was nutritional guidance, personal care, volunteers to spend some time with when they needed companionship, medication and symptom control, wound care, family support, visits from a chaplain, medical equipment that was continually updated as their condition deteriorated.......basically, everything they needed for a comfortable passage into the next dimension.

    What healthcare professionals must understand---and make their own---is the realization that the human mortality rate is 100%. Our bodies wear out, our cells cannot replace themselves quickly enough, and we die.....few people question that. It's HOW we die that seems to be the most difficult part of the discussion to process.

    Why is that? And how do we get past it so we can help our patients face this final transition with self-determination, dignity and grace?

    It's a lot of food for thought.......in the meantime, let's try to keep the dialogue going, shall we?
  8. by   MissIt
    One thing they told us in our hospice orientation is that sometimes it's easier for people to hear "the last phase of life" than "end of life" or "terminal" diagnosis. Also, we have so many physicians that send patients to us from the hospital telling them they have X days or weeks left to live. It would be so helpful if, instead, they would say something like "we think this patient is in the last phase of their life and would be better served by a model that promotes quality of life in this phase." Instead of saying does this patient have 6 months or less to live, we ask the doctors whether they would be surprised, if the disease ran it's normal course, if this patient died in the next six months. Sometimes the way you present things can really make a big difference. And definitely tell people that if they get better and no longer qualify for hospice services that they can be discharged (this does happen, we give really good care ) and that there are people who stay on hospice longer, sometimes significantly longer, than 6 months. Also, that they don't have to give up their hope. We never try to take someone's hope away. When people say they hope for a miracle, I tell them that nothing we do will make a miracle impossible. We are just here to add quality to their life and help their families.
  9. by   tgrosz
    vivalas makes some astute and interesting observations. not so sure
    how hospice can intervene in the process other than providing ongoing
    community education on "the last phase of life" as missit presents. it would
    seem to me that administrators such as vivalas, case managers, nurses and
    social workers that work in the hospital, ltac, alf, and ltc facilities are the direct
    link; but, all too often they get tied up in the business "end of life". also, we live
    in a death denial society that is more interested on how to extend life rather than
    to accept "the realization that the human mortality rate is 100%" which vivalas
    so adeptly points out. maybe the "death panels" as erins mentions or some alternative
    mandate will need to come to fruition before we may have any serious dialogue.
    just my thoughts, please add yours
  10. by   tewdles
    Many times these patients end up in the CCU or the ICU a result of chronic disease states that will ultimately end in death...COPD is an excellent example.

    Advanced directives, living wills, and durable power of attorney should be addressed in the PCPs office before (as mentioned by another poster) the patient has begun the process of dying. These things should also be addressed each and every time the patient is in the ED or admitted to the hospital. These discussions should include the adult children and spouse whenever possible.

    There was a good article in The NewYorker in the past year that really addresses the who, what , where, why, and hows for care as the patient sneaks closer and closer to death.
  11. by   bsnanat2
    Everyone makes excellent points here. I'm glad to say that my nursing school plans to implement more clinical exposure to hospice through the community health course. The faculty said they could tell a significant difference in those students who spent time at hospice. I agree that many wait far too long to take advantage of what hospice has to offer. It just makes me nuts how the state will ensure that a convicted serial killer dies with dignity in as painless a process as possible, while seniors and cancer patients are often left to linger in needless pain just because the family "isn't ready" and care providers are reluctant to broach the subject. I know this won't solve every case, but it sure would improve patient care overall. Advance directives and living wills should be primary care priorities.
  12. by   leslie :-D
    hospice is the ideal, to date...not the reality.
    no matter how much we discuss and attempt to inspire, i believe that hospice will not be any more utilized until our societal values accept death as inevitable and natural.
    this is why i am characteristically unwilling to engage is these discussions.
    an innate hopelessness has set in.

    another aspect i disagree wtih, is to discuss eol wishes while one is healthy.
    clarify: yes, get your directives in order while healthy and able, but be prepared that:
    - minds can change, (believe me, i've been there)
    - wishes are often not honored.
    add into the mix, a dr's unwillingness to 'give up the fight', AND a family's usual refusal and fear to allow/encourage death...
    no one wins, and i don't see it changing in the near future.

    my vocal protests with drs and families, has gotten me into a boatload of trouble...
    all because i advocated for my dying pts.
    so...the pt suffers.
    and when i share w/families, that pt is in pain/distress, i know they feel guilt.
    i let them feel guilt....and don't try to discourage it.
    good, i say.
    because that's the only shot 'we' have in allowing a peaceful, pain-free death.

    other than that, there are no other legal means of pt advocacy.
    and STILL, keep in mind, there are many pts who comply with family's wishes...just to keep the peace.

    sadly, it is only when the pt finally dies on earth, that it has become a winning situation.

    Last edit by leslie :-D on Jul 3, '11
  13. by   MissIt
    Quote from leslie :-D
    STILL, keep in mind, there are many pts who comply with family's wishes...just to keep the peace.
    This is very true.
  14. by   tewdles
    ahhhh leslie...when COPD pts visit their doctors (especially in the last couple years of their lives) they are not well.

    we will agree to disagree on this, as I think that PCPs or their nurses should be having honest conversations with their patients who have chronic life limiting disease which WILL contribute to, if not cause, their deaths.

    These are not easy discussions, but the patients and families deserve to have an understanding of their options and of the disease trajectory. Certainly these conversations should not kill the hope of the patients, but they should help the patients/families to make important decisions about what their goals are.

    The data shows that many, many chronic disease patients spend a considerable amount of time in the hospital, often in the critical care department during the last year of their lives. Too often that happens because the patients and their families have not been asked the hard questions. Their default position is to admit and treat aggressively. And too many of these people die in those settings even though they may have preferred to remain in their home...they often do not even know that is an option. Those who die from their terminal but chronic diseases in the hospital often suffer considerably in their last weeks of life. They often have zero quality of life precisely because they are in the unit.

    Of course, too many of those dying in the ICUs or general hospital rooms not only suffer, but the cost of their care is steep and generally does not promote comfort and dignity.

    I wish my mother's doc had had frank discussions with her. In the last year of my mother's life she suffered considerably from her COPD. Her doc's plan was pulmonary rehab, and multiple hospitalizations. When I visited her around Mother's day I was alarmed by her level of decline. I phoned her primary MD and asked for a hospice referral...he told me that he didn't think my mom was "ready" for hospice. I had to ask him directly if he thought my mother was dying from her emphysema and he had a difficult time acknowledging that indeed she was. I asked him if he realized that she was suffering from this disease. I asked him what plan he had in place to palliate her symptoms and provide even a small measure of quality into her remaining life...his response included hospitalizations, bronchodilaters, and steroids. No opiates (even though she had terrible referred pain in her back) to combat her dyspnea. No benzo or similar to treat her extreme anxiety secondary to her dyspnea. No sleep aid, even though she rarely slept more than a couple of hours consecutively and those hours were in her recliner, not her bed. No antiemetics even though she was nauseated and vomited after her NMTs

    The doc finally agreed to refer and my mom elected her hospice benefit before I returned home. Her hospice team worked hard and managed to minimize some if not most of her symptoms. Her quality of life improved significantly. She died 2 months after her referral...but she suffered terribly in the 10 months before that...it was heartbreaking.

    Again, these are not easy discussions, but her doc should have been talking with my mom and dad about her goals and "bucket list". He should have been palliating her symptoms rather than allowing her to suffer.

    The doc and my mom were friends, they had worked together for a number of years. I think that he was too emotionally involved to "go there" in a conversation.

    I believe that this type of phenomenon is more common than it is uncommon. And thus we have elderly people, dying of chronic and life limiting diseases who are essentially tortured in the last months/year of their lives. They ultimately die in the hospital setting when many of them would have preferred to be in their home, surrounded by their family, friends, pets, and possessions.

    Okay...that was quite a ramble and rant. Because I believe we CAN do better than we currently are in the care of these type of patients. It is part of my mission to impact this type of practice and perception.