The Dark Side of Hope

[joeythekangaroo]

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.

[heron, ASN, RN]

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.

[macawake, MSN]

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.

I think that there is such a thing as an objectively bad death. If you picture a person dying screaming from physical agony and emotional/spiritual anguish,

I think that you agree that's bad.

Of course a peaceful death has value and I think that's what we'd all wish for a loved one if we were 100% rational. Denial and the inability to cope with impending death/loss of a loved one can be a barrier to rationality. It can be an obstacle that affects the ability to make selfless and compassionate decisions for a loved one who can no longer voice their wishes. The refusal to let go at a time when medical interventions only serve to delay the inevitable and prolong suffering is in my opinion grossly unfair to the dying person. If I ever did that to a loved one, I can only hope that some healthcare professional would have the ethical backbone to try to nudge me in the right direction by giving me compassionate but factual and realistic information and help me gain the strength required to let my loved one go.

It think that figuring out after you've worked your way through the grief process that you prolonged someone's suffering to no avail would be a horrible and almost unbearable realization.

I will always advocate for my patients. I do it when they are alert and oriented and I will not abdicate my responsibility when they are at the most vulnerable and helpless point of their lives. I think that's when they need it the most.

@OP, thank you for your post. I think this is an important topic.

[dishes, BSN, RN]

I understand what everyone is describing about discouraging futile medical intervention and advocating for pain management for the terminally ill patients, as it is the medicalized death point of view that we are all trained in and familiar with. What I am questioning is, are nurses self aware when they make value judgments about patients and families responses to death and dying? Some nurses believe that bereaved family members remember their loved ones death as good or bad depending on whether the pain was managed, but bereaved memories are way more encompassing than that and families who that felt their values were judged by nurses, remember that judgement.

[gonzo1, ASN, RN]

Beautifully written article Joelle addressing an issue that most of us still do not have a definitive answer to. We often see this happening in our ICU and sometimes it becomes very painful for staff to watch a patient suffer. That said, I have realized that I will never have a good answer for this.

Recently two patients that were completely given up for dead, even by their doctors, made full recoveries. They were both septic patients. They were kept on life support long after most would have been stopped, but their families kept saying no. Because of these two patients I now see both sides. For me it's in the hands of God.

[missmollie, ADN, BSN, RN]

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.

I disagree. It is a medical decision that nurses need to advocate for. Why do we want the patient to have a "good" death, a death where they receive pain medication and are comfortable? Because we have the medical knowledge and experience to understand that no amount of intervention is going to change the inevitable outcome.

Making the patient comfortable allows the family can try to enjoy what little time a patient has left. This patient will code and a team of people will surround her, break her ribs, and push medications that may restart her heart into a normal rhythm. She'll be on a vent that breathes for her. She'll have numerous drips, IVs, and be sedated. But she will be alive for a short time longer.

We try to push for a "good death" not just for the patient, but for the family.

The mother of that child has the possibility to regret her decision the rest of her life. We have the capacity and knowledge to prevent that regret.

[Nurse4babies]

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'?

It absolutely matters when the patient is a minor. It's why we have procedures in place when parents refuse to provide appropriate care for children. Our role, as nurses, is to ALWAYS advocate for the health, safety and comfort of our patients.

[Axgrinder]

Not everyone is able to accept the hard cold facts about a dire prognosis. Some people will become very angry and offended - even if the advice is sound and well meant straight from the heart. It's how they cope I suppose. It's surprising how far the human mind is willing to go to delude itself in the name of self protection.

[Anonymous865]

I understand what everyone is describing about discouraging futile medical intervention and advocating for pain management for the terminally ill patients, as it is the medicalized death point of view that we are all trained in and familiar with. What I am questioning is, are nurses self aware when they make value judgments about patients and families responses to death and dying? Some nurses believe that bereaved family members remember their loved ones death as good or bad depending on whether the pain was managed, but bereaved memories are way more encompassing than that and families who that felt their values were judged by nurses, remember that judgement.

You are so right.

I lost my dear mother 5 months ago. Over the past 50 years my mother had talked extensively with each of her children and her husband about what her wishes were if she were unable to make her own medical decisions. She made all of her children and her husband her POA. We were all in agreement about what Mom would and would not want, but we had to battle daily with the treatment team to get them to respect our decisions.

I'm sure they thought they were "advocating for the patient," but they had never even met my mother until she was hospitalized. They had no idea what my mother's values were or what she would want, but they were very righteous about trying to make sure Mom died the way the treatment team would have wanted for themselves.

We are all still very comfortable that we did what Mom wanted. We are all still very bitter about the battle we had to fight to get Mom's wishes respected.

Before someone says that we are stuck in the grieving process - we are not. Mom had a wonderful life. She died the way she would have wanted. We have wonderful memories. She made a huge impact on a lot of lives. We had the funeral and put our grief behind us and went back to living life, because that is the way Mom raised us.

I'm sorry, but I do not want my nurse or my doctor "advocating" for the type of death I have. You can die how you want when that time comes, but please let me decide what is a good death for me. If I am unable to express my wishes, then let my POA make the decisions. I appointed them as my POA, because they know my values.

[Anonymous865]

I disagree. It is a medical decision that nurses need to advocate for. Why do we want the patient to have a "good" death, a death where they receive pain medication and are comfortable? Because we have the medical knowledge and experience to understand that no amount of intervention is going to change the inevitable outcome.

Making the patient comfortable allows the family can try to enjoy what little time a patient has left. This patient will code and a team of people will surround her, break her ribs, and push medications that may restart her heart into a normal rhythm. She'll be on a vent that breathes for her. She'll have numerous drips, IVs, and be sedated. But she will be alive for a short time longer.

We try to push for a "good death" not just for the patient, but for the family.

The mother of that child has the possibility to regret her decision the rest of her life. We have the capacity and knowledge to prevent that regret.

Yes. A parent or a loved one may later regret insisting on more treatments to prolong the patients life (prolong their suffering). On the other hand a parent or loved one may later regret their decision to stop treatment. They may wonder if they had insisted on more treatment whether the patient might have recovered or had a better quality of life.

No matter what someone does, there is a possibility they will regret later the decisions they made.

[DNPboundatUIC]

I worked for two years on the high acuity unit of a long term acute care hospital. Currently I am a hospice nurse. I had a breif stent on the pediatric ICU. I have considerable insight on this topic. One thing I do not have is personal experience. Thank you anonymous865 for your input. I agree with you that the most important thing is to honor the patients wishes. If we know what a patient wants there is no question in my mind that we should honor that. That includes watching a COPD patient struggle to breathe and writhing in pain because they refuse to take morphine. It includes continuing ventilator and G-tube feedings on a globally aphasic patient with multiple stage 4 wounds. It includes snowing a forty year old patient who does not want to be in pain even if that means his life is shortened by an indeterminate amount of time. Where we run into any ethical question is when we do not know what a patient wants. And in the OP the girl is old enough that someone needs to speak with her and determine what her wishes are.

I belong to a faith that believes in miraculous healing. I have been part of praying for healing and seen results from that. I also believe that God does not want his children to suffer needlessly. My biggest issue with this story is that the child is BiPap dependent. That device is intended for short term treatment only. Effects of using it long term are devastating. If we are waiting for a miracle and the girl needs ventilatory support please trach her and put her on a vent. At least that way she won't suffer significant, painful, skin breakdown of the face and has a possibility of being able to speak.

I feel that the appropriate approach is education of the family while meeting them where they are.

[NurseGirl525, ASN, RN]

You will never know until it's your own child. Your very own child. Not a grandparent or even parent, your child. That's a whole different ball game.

The parents were understandably in denial.

[Tenebrae, BSN, RN]

fortunately we dont have situations where doctors keep handing out intervention after intervention and specially when there is little or no benefit to the patient.

When my mum was diagnosed with stage four lung cancer, they were very straight forward with her and said "You are not a candidate for surgery. We can give you radiation and chemo which will prolong your life by X% however we are not able to cure you"

I get that people dont want to let go of their loved one. I endeavour when communicating with patient's families to communicate that I am guided by what their loved one would want. I am also incredibly forthright. If someone asks me whether something would help and I am knowledgeable about it, I will let them know. Also not afraid to run things by the patients GP