The Dark Side of Hope The Dark Side of Hope | allnurses

The Dark Side of Hope

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    Far too often, we as nurses are faced with the dark side of hope. However, I believe that through experiences and knowledge we can and should educate our families about a hope that allows one to let go and to grieve appropriately.

    The Dark Side of Hope

    The Dark Side of Hope
    By Joelle Yanick Jean, RN

    About a year ago, I witnessed hope in the worst way. It wasn’t the hope that in the back of your mind you prayed was going to come true and it actually did. This hope was malicious; a menace. It was taunting, a bully, a liar. Being a nurse, you are often faced with this type of hope. The hope you know is not going to end well because of your experience and medical knowledge. It's the hope that parents, patients, family members, even staff members have; the hope their loved ones or their patient is going to live despite a poor prognosis.

    One evening, as the charge nurse, I received a phone call from a hospice nurse who was calling in her patient to the ER because her NG tube fell out. She was calling me directly because she wanted to warn me. The patient was very sick, and the parents did not want any interventions other than replacing the NG tube, and once replaced, the patient was to go right back home.

    The young girl was twelve, and had end stage cancer. The parents were in denial about her illness. They refused to sign a DNI/DNR. They were hoping she was going to get better. They were hoping she was going to be cured from the cancer. The hospice nurse cautioned me the patient looked very ill and probably should be in a hospital, but the parents understandably wanted her home.

    When the patient arrived in the ER, I was immediately aware of the situation. Hope had wrapped its ugly hands around this family. It had taken over their lives, just as the cancer had taken over this young girls’ body.

    The young girl was fully conscious, on a bipap machine, frightened and suffering. When we placed her in a room, I introduced myself and touched her hand. She had skin breakdown around her nose and eyes. Her eyes were puffy from the pressure of the bipap machine which was helping her breath. A foley catheter was placed to catch her urine because she could not urinate on her own. A fentanyl patch was placed on her arm for pain control. All interventions used to prolong her life because Hope had said so.

    According to the Oncologist, the family was counseled many times on the prognosis of the young girl’s disease, but the parents just could not accept it. They hoped through prayer and faith, this young girl was going to walk again, play again, laugh again. They prayed loudly around her and with conviction as we replaced the NG tube.

    Hope allowed this girl to suffer, to be in pain. Maybe their hope had seeped into us as well, allowing the medical team to honor this family’s wishes. Where was the ethical team? Where was the person who says, this is enough, let her die in peace. Hope had not allowed them to be present.

    That night, I wanted a different hope for this young girl and her family; a hope that I often wish would come sooner than later for some families. I wanted a forgiving hope, the hope that kept its promise. I wanted the hope to take over that doesn’t let you down. I hoped for the suffering to end for this young girl; I hoped she would die a peaceful and painless death. I hoped this young girl’s family would come to the realization she was suffering and the God they prayed to wanted her to come to his home not theirs.

    As nurses, we are often faced with the uglier side of hope. However, I believe that through experiences and knowledge we can and should educate our families about a hope that allows one to let go and to grieve appropriately. I know it is extremely difficult to let someone go, and not everyone has the strength, but I believe since we are nurses we are better equipped to deal with these types of situations.

    Sometimes it's the nurse's role to be the voice of reason. Families listen to us and value our opinions. I wish I had had the courage to tell this young girl’s family that she is dying, and to please let her go, but I’m hoping, hope finally came to its senses and told the family the truth.
    Last edit by tnbutterfly on Jul 1, '16
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  2. Visit joeythekangaroo profile page

    About joeythekangaroo

    My name is Joelle Jean. I am an Assistant Nurse Manager in the Pediatric ER. I've been a nurse for 10 years.

    Joined Jun '16; Posts: 1; Likes: 25.

    Read My Articles

    25 Comments

  3. Visit  tnbutterfly profile page
    #1 7
    Thank you for this great article! This is a sad story that we as nurses see all too frequently. Hope can be a good motivator as long as the focal point of hope is the patient's best interest.
  4. Visit  offlabel profile page
    #2 9
    I think you're confusing "hope" with denial and delusion... very different things. Hope is always and every where a good thing... always. What is described here is a real phenomenon that the family needs help with, but it isn't hope.

    To have hope, you need to be aware of what you're facing. There are elements of peace and acceptance with real hope and is possible with a family like this.
  5. Visit  dishes profile page
    #3 2
    Does it really matter if a death is a 'peaceful' death? Does it really matter if family members pray that their loved one will live? Is our role to allow people to cope with their loved one's impending death in their own way without judging them? Is our role to accept that all responses to life threatening illness and grief are 'approipriate'?
  6. Visit  offlabel profile page
    #4 1
    Quote from dishes
    Does it really matter if a death is a 'peaceful' death? Does it really matter if family members pray that their loved one will live? Is our role to allow people to cope with their loved one's impending death in their own way without judging them? Is our role to accept that all responses to life threatening illness and grief are 'appropriate'?
    Not all responses are appropriate... some are objectively bad. But no, if you're a nurse, counseling and social work intervention come way down the line in most cases except maybe hospice nursing. Gentle support and referral to appropriate professionals and resources if necessary. Most of the rest is medical treatment.
  7. Visit  dishes profile page
    #5 1
    Quote from offlabel
    Not all responses are appropriate... some are objectively bad. But no, if you're a nurse, counseling and social work intervention come way down the line in most cases except maybe hospice nursing. Gentle support and referral to appropriate professionals and resources if necessary. Most of the rest is medical treatment.
    In the case of of family coping with a loved one's terminal illness, what criteria determines if their response is objectively bad?
  8. Visit  nutella profile page
    #6 10
    Hope is the believe that things will be better in the future. This belief is not necessarily grounded in reality. People can be in denial and have hope that things will get better because of a miracle. Or they can be realistic and still have hope that things will get better because of a miracle. Or they hope that things get better because there is a chance.

    In situation like mentioned - end-stage of a terminal illness I sometimes say that no higher power would want a human being to suffer. And if that higher power wants to perform a miracle, it will happen anyways - in the mean time focus on comfort.
    It is hard. Parents do not want to loose their children. Oncologists who are uncomfortable with the fact that death is a reality and who perceive death as a form of failure seem to be the ones who give ambivalent messages to patients/families. It goes like this:
    "Well - I am sorry. We have done everything we can do, but nothing is working and your illness is progressing"
    Patient / family are upset/shocked/ start to cry
    "At this time, it would be best to switch to a care plan that is palliative"
    More crying
    "BUT do not loose hope. There are new treatments out there all the time. In fact, something new can come along really soon. They could call you any time.
    Patient stops crying and "swears" not to give up.

    Of course the oncologist knows that chances are almost non existing and even if there is something "new" coming along, the body is so sick with advanced disease that treatment will only drag out the inevitable.

    And it is not only oncologists. Cardiologist do the same thing.
    "Your heart is very weak, we have tried everything we can and your kidneys are already not working well. Your body has a lot of problems and you are not a candidate for a transplant or assist device because of age/disease. We do not have anything we can offer you, really."
    Patient/family silent
    "BUT we can send you to xyz hospital and get you on a medication that can get infused cont with a pump and you can go home with the medication" and more cheerful : "people are going home with those pumps now all the time"
    Family happy.
    Until they find out that the copayment is 1000s not per year but per month.
    In addition, they assume that this positive inotrope medications that are such a miracle each time the patient gets admitted, will be great at home and "fix" everything. Most of the times, they do not understand that this is a palliative medication/ approach. It is not a fix, it was only meant for patients to get out of the hospital home so they can spend the time left at home (and die at home).
    Families who can not shell out this amount of copayment think that they are killing their family member because they did not understand that it is not curative to begin with.
    And to make it even worse - even if a patient is already bedridden, pressure ulcers, unable to take care of themselves even minimally - the cardiologist still puts that option out.

    Dying is optional?
  9. Visit  nutella profile page
    #7 10
    Quote from dishes
    Does it really matter if a death is a 'peaceful' death? Does it really matter if family members pray that their loved one will live? Is our role to allow people to cope with their loved one's impending death in their own way without judging them? Is our role to accept that all responses to life threatening illness and grief are 'approipriate'?
    Yes - a peaceful death matters a lot.
    Because that is what family remembers years later - how the patient died.
    if a patient is suffering because the family can not bear the thought of death in the fact of terminal illness, it means that the family is not coping. They put their own needs over the ones of the suffering family member and justify their egoistic behavior with religion. That is not ok if the patient is forced to suffer through the terminal illness. We are obligated to advocate for patients and to speak up. But the worst cases usually require social work and palliative care and sometimes an ethics consult to help.
  10. Visit  offlabel profile page
    #8 5
    Quote from dishes
    In the case of of family coping with a loved one's terminal illness, what criteria determines if their response is objectively bad?
    Drinking and abusive behaviors toward others for starters.... inability to go to work or care for children... other effects of depression and despair. The list goes on and on. We can help them find help.
  11. Visit  offlabel profile page
    #9 2
    Again, just my opinion, but a positive response to long shot odds given by a medical professional isn't 'hope' per se. It's wishful thinking and that isn't hope.
  12. Visit  TheCommuter profile page
    Quote from dishes
    In the case of of family coping with a loved one's terminal illness, what criteria determines if their response is objectively bad?
    If the family's response facilitates the prolonged suffering of a terminally ill patient whose treatment plan should be palliative, I'd say their response is bad.

    The 12-year-old terminally ill girl in the OP is still a full code and continuing to receive inappropriate interventions because it is comforting to the parents. However, the comfort of the girl should override the feelings of the family, IMHO.

    Death is a natural conclusion to the circle of life. More people need to come to this realization and stop prolonging the inevitable at the expense of the dying person.
  13. Visit  Anonymous865 profile page
    #11 2
    Quote from dishes
    Does it really matter if a death is a 'peaceful' death? Does it really matter if family members pray that their loved one will live? Is our role to allow people to cope with their loved one's impending death in their own way without judging them? Is our role to accept that all responses to life threatening illness and grief are 'approipriate'?
    I agree with you Dishes.

    Defining what is a "bad death" or a "good death" is a value judgement not a medical decision

    Nurses, physicians, and other healthcare providers should respect the values of the patient (for children it should be the family's values) when it comes to how someone dies. They should not try to impose their own definition of a "good death" on the patient.
  14. Visit  heron profile page
    #12 5
    Quote from Anonymous865
    I agree with you Dishes.

    Defining what is a "bad death" or a "good death" is a value judgement not a medical decision

    Nurses, physicians, and other healthcare providers should respect the values of the patient (for children it should be the family's values) when it comes to how someone dies. They should not try to impose their own definition of a "good death" on the patient.
    That's true, as far as it goes. Don't ignore the possibility of dysfunctional grieving. Yes, it's a thing and can trigger major emotional and physical problems. When a family/POA is making decisions that are clearly not the wish or in the best interest of the person doing the dying, they could be working their way through denial - it does take time - or they could be stuck in it, which is no bueno. Ignoring that is a disservice to them.

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