End stage glioblastoma

[Horseshoe, BSN, RN]

Question for hospice nurses:

Today my friend's daughter lost her battle with stage 4 glioblastoma, less than one year after diagnosis and aggressive treatment and after only five days in hospice care.

I was told that today was horrible, with her daughter not conscious, yet struggling fiercely to breathe. The family was traumatized by this suffering. Siblings were a wreck, watching this. Her tumor was very invasive, woven throughout the brain stem.

I have experience with end of life scenarios but not hospice, and not brain tumors. My question is, couldn't proper administration of morphine or other narcotic have prevented some of this respiratory struggle? I hate to think of my friend and her family agonizing all day today with this development. It's bad enough losing a child; and in this case, only two weeks ago, things were looking very good. In ICU, when we saw respiratory difficulties in a dying patient, we gave all manner of drugs to relax the patient and ease distress of families.

Am I being unfairly critical? I know we can't solve every problem, but I hate to think of the hell this family went through today and wonder if the hospice nurse did everything she could have under the circumstances. Maybe the family was witnessing agonal breathing and misinterpreted it as respiratory distress. I don't know, I wasn't present.

I'm asking for myself only. I have no intention of planting the seed with the family that I'm wondering about the hospice care their daughter received. And note that I'm not declaring, just asking.

Thanks.

PS-I could never do what you nurses do. Kudos.

[BD-RN, BSN, RN]

I don't work in hospice, but I do work in hem onc, and have dealt with end of life care.

Yes, morphine or dilaudid can be given not only for pain, but to slow respiratory rate, which falls in the category of comfort.

Some RNs are afraid of giving opioids to comfort care patients with unstable vital signs, because they are afraid the side effects from them will actually "assist" the dying process. Education needs to be provided to these RNs that in hospice, comfort is the goal. Therefore, if a patient with a low blood pressure or respiratory rate shows signs of pain or air hunger, or any sign of discomfort, it is acceptable to give a small bolus of pain medication to relieve them. If the patients vital signs further decline, so be it.

Patients on hospice can receive supplemental O2 if it relieves air hunger as well. They also can receive Tylenol for a fever, etc. The plan of care is symptom management: whatever makes the patient most comfortable at the time of their death.

[BerryhappyRN, MSN, RN]

I am a hospice nurse. Unfortunately difficult deaths do occur. I have been in this exact situation and very often, sadly, it has been with young patients. Sometimes hospice can do as much as possible, 20mg morphine qhour, dilaudid, lorazepam, haldol, 10L continuous oxygen, reposition, EVERYTHING the MD can think of, EVERYTHING the RN can think of...but it just doesn't work.

I have come to believe that when a patient is young, aside from their disease process, the body fights to live, even as the cancer prevails. I have found this to be true particularly in brain cancer. It is as if our other organs haven't yet realized the damage the cancer has done to the brain, and so they fight to keep working. Our heart wants to continue beating, our lungs want to keep oxygenating, our soul wants to stay, all the while the cancer is forcing it to stop.

Hospice goal is comfort at end of life. But that is just the goal, sometimes no matter how hard we try we just cannot accomplish that goal. Sometimes the disease is much more powerful and progresses much faster than what we can get ahead of. I know this sounds strange but after some of my more difficult deaths, I have imagined that if my patient had just lived a little bit longer I could have gotten ahead of that pain, slowed that respiratory distress, calmed that agitation, whatever it is, if I had just had a little bit longer. Sometimes it is a battle against the clock, and only the cancer knows how fast the clock is moving.

I understand your confusion and the grief you have for yourself, your friend, and her daughter. It is valid and you are not being critical at all. But please know that just as your friend and her family are tormented by their daughter's difficult death, so is her hospice nurse. It never leaves us, none of the deaths do. Also please realize, merely by the fact that your MD and RN were hospice speciality they were not afraid to give morphine. They do not need additional training, nor additional education. Brain cancer is a savage beast that takes everyone by storm, even those best trained to deal with it.

I am so sorry for everyone involved, even for her hospice staff.

[Horseshoe, BSN, RN]

BerryHappyRN, thank you. That makes me feel a lot better.

When I was in nursing school, I worked a big trauma ICU as a tech. One patient I'll never forget: a 20 y/o man who was close to brain death in an accident, but didn't quite meet all the criteria. Family decided to cease treatment, said their goodbyes, but didn't want to stay. They wanted to remember him alive, not dying.

They extubated him, and I figured "okay, in a few minutes, he'll stop breathing and it will all be over with."' But no, just as you described, his heart and lungs were perfectly healthy, and they fought HARD to keep going. The residents working this case kept giving him everything they could think of to help things along, but he struggled mightily no matter what they threw at him. It went on all day and was one of the more horrific things I've ever witnessed.

Thanks for addressing my post.

[Julius Seizure]

BerryHappyRN, thank you. That makes me feel a lot better.

When I was in nursing school, I worked a big trauma ICU as a tech. One patient I'll never forget: a 20 y/o man who was close to brain death in an accident, but didn't quite meet all the criteria. Family decided to cease treatment, said their goodbyes, but didn't want to stay. They wanted to remember him alive, not dying.

They extubated him, and I figured "okay, in a few minutes, he'll stop breathing and it will all be over with."' But no, just as you described, his heart and lungs were perfectly healthy, and they fought HARD to keep going. The residents working this case kept giving him everything they could think of to help things along, but he struggled mightily no matter what they threw at him. It went on all day and was one of the more horrific things I've ever witnessed.

Thanks for addressing my post.

This makes me so sad that his family would leave him to pass on alone. Even if he wasn't aware of it at all.

[Horseshoe, BSN, RN]

This makes me so sad that his family would leave him to pass on alone. Even if he wasn't aware of it at all.

He wasn't alone. We were all there with him, holding his hand at times. His nurse would talk to him before she would do things for him.

I noticed that OFTEN patients would die as soon as their loved ones left the room to go to the bathroom or make a quick trip to the cafeteria for a drink, especially in cases where the loved ones kept a close vigil. I think on some level the loved one prolongs their staying by sheer will. So I could understand how the family might prefer to kiss him, and give him permission to go by leaving.

It might not be how I'd handle things, but I can understand their thinking.

[KMRN81]

I agree with everything BerryHappyRN said.

I'm an inpatient hospice nurse - kind of the ICU of hospice care. We see so many types of breathing changes at end of life. It's possible that the hospice nurse was giving everything possible but the respiratory changes were caused by pressure to the brain stem (that same kind of breathing pattern we see in terminal stroke patients), or that she was in acidosis with Kussmaul breathing.

No matter the cause, it is difficult for loved ones to see this happening. I pray that she had the best care possible and the family has support following their daughter's death.

[AGACNPTX]

I am a hospice nurse. Unfortunately difficult deaths do occur. I have been in this exact situation and very often, sadly, it has been with young patients. Sometimes hospice can do as much as possible, 20mg morphine qhour, dilaudid, lorazepam, haldol, 10L continuous oxygen, reposition, EVERYTHING the MD can think of, EVERYTHING the RN can think of...but it just doesn't work.

I have come to believe that when a patient is young, aside from their disease process, the body fights to live, even as the cancer prevails. I have found this to be true particularly in brain cancer. It is as if our other organs haven't yet realized the damage the cancer has done to the brain, and so they fight to keep working. Our heart wants to continue beating, our lungs want to keep oxygenating, our soul wants to stay, all the while the cancer is forcing it to stop.

Hospice goal is comfort at end of life. But that is just the goal, sometimes no matter how hard we try we just cannot accomplish that goal. Sometimes the disease is much more powerful and progresses much faster than what we can get ahead of. I know this sounds strange but after some of my more difficult deaths, I have imagined that if my patient had just lived a little bit longer I could have gotten ahead of that pain, slowed that respiratory distress, calmed that agitation, whatever it is, if I had just had a little bit longer. Sometimes it is a battle against the clock, and only the cancer knows how fast the clock is moving.

I understand your confusion and the grief you have for yourself, your friend, and her daughter. It is valid and you are not being critical at all. But please know that just as your friend and her family are tormented by their daughter's difficult death, so is her hospice nurse. It never leaves us, none of the deaths do. Also please realize, merely by the fact that your MD and RN were hospice speciality they were not afraid to give morphine. They do not need additional training, nor additional education. Brain cancer is a savage beast that takes everyone by storm, even those best trained to deal with it.

I am so sorry for everyone involved, even for her hospice staff.

Very well said.

[Horseshoe, BSN, RN]

It's possible that the hospice nurse was giving everything possible but the respiratory changes were caused by pressure to the brain stem (that same kind of breathing pattern we see in terminal stroke patients), or that she was in acidosis with Kussmaul breathing.

I think you may have called it. Her tumor was apparently wrapped around the brain stem like the arms of an octopus around its prey. When I heard that was the case and the doctors had sent them home with hospice, the first thing I thought of was the possibility of some tortuous breathing difficulties.

I've been writing and re-writing, writing and re-writing again the text of a letter to my friend. I keep tearing them up as they sound so inadequate.

Thank you for treating my questions with respect rather than defensive posturing. I know very well that things often look so different from the outside than the reality from the inside. I've dealt with that in my career in ICU as well. Y'all are awesome.

[Race Mom, ASN, RN]

My mother-in-law died from a brainstem glioblasoma multiforme. She was on hospice for almost 3 days. She taught me how to be a hospice nurse. I was an L&D nurse at the time, but quickly educated myself on hospice (it was a weekend admission and not very much support for us, unfortunately). She never lost her wit, or her mental ability. She just faded quickly that last week. Her last day was spent with her eyes closed (she said the day before that the earth was spinning and it made her nauseous so she kept her eyes closed). I had a true heart-to-heart with her, about 2 hours of me talking and crying and laughing and forgiving and telling her we would all be ok. At that moment, she transitioned. She began Cheyne-stokes breathing. She was also having the "death rattle". It was so unforgiving and difficult to listen to. She blessed me with teaching me "textbook dying". I was grateful to have researched what to expect. It really taught me how to educate my families. Perhaps this family was witnessing "death rattle" and Cheyne-stokes breathing. It is a normal process that is believed to cause no distress to the patient. God bless

[nutella, MSN, RN]

I want to provide some other insight.

At the end of life breathing changes and becomes irregular. Breathing can start to become less with some gasping in between. Breathing can stop for seconds and re-start as the body is "winding down". Secretions can start to pool in the back of the throat because the dying person does not swallow, which can lead to noisy breathing, which is not painful or bothering to the patient.

As a palliative and hospice nurse I need to say that it is not possible to tell anything accurate without having been with the child who has died.

When we give morphine at the end of life to relief pain and shortness of breath breathing will still slow down and get irregular in most cases before breathing finally stops.

The family who lost the child should utilize the bereavement services that hospice offers to cope with the loss.

[alioo]

Why was she on hospice? Did they sign a dnr? Did they take that to mean dnt? Why didn't they intubate or or at least have her on a nasal cannula or ventilator? Morphine does hasten death. Maybe she didn't want to die and she should have been given more options. Hospice can be a culture of death. Many nurses get confused on what it means to provide comfort. Comfort can actually prolong life. Starvation and hunger are not always easy and drugs do not always dull those needs. But admins push for dnrs to be signed before a patient that has a terminal diagnosis can be admitted. She would have been better off at home if they were just going to stand around and offer no help.