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.
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.
Seriously ill, terminally ill, and the dying patients are my line of work.
A lot of time it comes down to what is important to a patient, what the overall goals of care are, and how much they are willing to go through to gain more time. Basically, those decisions are mostly very individual and depend on a lot of different factors like age, are there young children, the kind of illness, how much pain and suffering it involves, overall satisfaction with life, how spiritual a person is and so on.
I am only talking about adults here - it gets more complicated when the patient is a minor and the parents/guardians make decisions.
In the times of patient-centered care this means that we should explore what the wishes are and treatment should be tailored towards.
Of course this is with the understanding that it is within reason and medically reasonable. I am not talking about futile efforts here.
Physicians do not have an obligation or should consider futile care efforts.
The other important point here is what constitutes suffering. This varies and is also depending on culture and religion.
I have taken care of patients who were visibly in pain and uncomfortable, admitted to moderate to severe pain, but would not take pain medication for a variety of reasons. The family members were is a lot of stress as they had to live with the family member that was moaning, groaning, visibly in pain, but would not allow to get medication until the very end. Those family members are often very traumatized by this process. It is even worse when parents make the decision that a child has to go through pain because they do not want the child to get too tired to eat/drink. They rather accept that the child is in pain. The problem is that parents impose their view on suffering and necessity on the child.
What about judgement?
I am not free of judgement myself.
When the family of a 90+ y old patient with severe dementia/ bedbound/pressure ulcer got sepsis from a UTI that was contracted at home, the family kept the patient full code and asked for intensive care unit when breathing got harder and blood pressure low. The patient was on bipap and intubation was a constant "threat". Pressors were started and more pressors. Access was crappy so they struggled with that. Finally kidneys failed and the family wanted dialysis. The nephrologist told them that he would not offer dialysis at this point with all the illness / age. Everybody had discussions with the family. And the healthcare proxy kept saying that it was religiously motivated.
The patient's heart go weaker with all the illness and arrhythmic and stopped. The doctor asked the family if they really wanted chest compressions, which they wanted. The medical team insisted on the family staying in the room to witness the code. Just before the first compression, the person was already in position to perform them, the healthcare proxy said to stop and it was enough.
I am a very patient person and have a lot of compassion and understanding. But even I lacked compassion for the family after 2 weeks of increasingly futile efforts with religious motivated "cruelty". The patient could have died comfortably on the floor when it was clear that the infection was not responding to treatments - it was not the first UTI either and eating had been difficult for a while. The patient had been non verbal for months as the dementia had progressed.
Did I mention that the family was also paid caregivers??? Talk about motivation to keep a patient alive.
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.
Your opinion and obsevations provide cogent analysis of a complex and rancourous subject. Thank you.
nutella, MSN, RN
1 Article; 1,509 Posts
Seriously ill, terminally ill, and the dying patients are my line of work.
A lot of time it comes down to what is important to a patient, what the overall goals of care are, and how much they are willing to go through to gain more time. Basically, those decisions are mostly very individual and depend on a lot of different factors like age, are there young children, the kind of illness, how much pain and suffering it involves, overall satisfaction with life, how spiritual a person is and so on.
I am only talking about adults here - it gets more complicated when the patient is a minor and the parents/guardians make decisions.
In the times of patient-centered care this means that we should explore what the wishes are and treatment should be tailored towards.
Of course this is with the understanding that it is within reason and medically reasonable. I am not talking about futile efforts here.
Physicians do not have an obligation or should consider futile care efforts.
The other important point here is what constitutes suffering. This varies and is also depending on culture and religion.
I have taken care of patients who were visibly in pain and uncomfortable, admitted to moderate to severe pain, but would not take pain medication for a variety of reasons. The family members were is a lot of stress as they had to live with the family member that was moaning, groaning, visibly in pain, but would not allow to get medication until the very end. Those family members are often very traumatized by this process. It is even worse when parents make the decision that a child has to go through pain because they do not want the child to get too tired to eat/drink. They rather accept that the child is in pain. The problem is that parents impose their view on suffering and necessity on the child.
What about judgement?
I am not free of judgement myself.
When the family of a 90+ y old patient with severe dementia/ bedbound/pressure ulcer got sepsis from a UTI that was contracted at home, the family kept the patient full code and asked for intensive care unit when breathing got harder and blood pressure low. The patient was on bipap and intubation was a constant "threat". Pressors were started and more pressors. Access was crappy so they struggled with that. Finally kidneys failed and the family wanted dialysis. The nephrologist told them that he would not offer dialysis at this point with all the illness / age. Everybody had discussions with the family. And the healthcare proxy kept saying that it was religiously motivated.
The patient's heart go weaker with all the illness and arrhythmic and stopped. The doctor asked the family if they really wanted chest compressions, which they wanted. The medical team insisted on the family staying in the room to witness the code. Just before the first compression, the person was already in position to perform them, the healthcare proxy said to stop and it was enough.
I am a very patient person and have a lot of compassion and understanding. But even I lacked compassion for the family after 2 weeks of increasingly futile efforts with religious motivated "cruelty". The patient could have died comfortably on the floor when it was clear that the infection was not responding to treatments - it was not the first UTI either and eating had been difficult for a while. The patient had been non verbal for months as the dementia had progressed.
Did I mention that the family was also paid caregivers??? Talk about motivation to keep a patient alive.