How do you tell families or caregivers that their loved one is actively dying?

[Jack Hazz, BSN, RN]

I love hospice...I love working and developing relationship with my patients and families. Some are hard to deal with over-all, but most are loving and understanding and easy to deal with. But the hardest ones for me are the families that are still in denial and unaccepting about their love ones transitioning, especially the ones that do not realize that they do, and it does not even matter is they are pleasant or nasty.

I had a patient's son once whose mom was dying and he said he knows and accepts that he is dying soon. But he told me he wants to keep feeding her despite the fact that she is has been refusing food "to give her a FIGHTING CHANCE". He even went and bought her ensure and facility staff in the ALF she is staying at told me he basically makes her eat all her food even if it takes them 3 hours to do so. Everytime I talk to him about end of life and transitioning of hospice patients, he gets defensive and literally closes his mind on anything.

I'd say that I'm quite a good listener and very good at addressing questions and concerns of my patients and caregivers. I say that based on the very good and encouraging comments about me by probably 90% of my cases. Of course, I am not perfect. But the biggest challenge for me is on how to tell the family that their mom or dad or uncle, etc is dying. I find myself always stopping at the point where I am about to tell them, yes, your mom is dying...actively...and you might see these horrible symptoms before they pass. And if I did, I kind of think back and wonder if I shouldn't have told them, or if I said the right things, or if I showed enough empathy or...I just kind of starting to doubt whether I did the right thing. I know I did the right thing telling them, but I still feel horrible. I get over it, but still.

How about you guys and girls, HOW DO YOU TELL THEM ABOUT EOL?

PS Sorry about the long story for a simple(?) question...

[toomuchbaloney]

Unfortunately it is NOT an easy question.

In general, we have opportunity to speak with family about the processes that they are observing and those which we anticipate they will observe in an ongoing dialog over weeks of time.

If family remains in denial, I allow that. I don't crush them with information that they won't accept. I keep the most reasonable family member informed and ask Pastoral or MSW staff to assist them.

In my view, one of the biggest gifts that we (hospice professionals) give to patients and their families is the direct honesty about their circumstances, no matter how uncomfortable those words are in our mouths. I cannot count the number of times that I have been appreciated primarily because I am/was honest with them which gave them permission to be honest with one another.

I encourage them to seek the pathways of fewest regrets as they approach end of life issues.

good luck

[Jensmom7, BSN, RN]

Remember that Hospice is a team. You can always call your Chaplain or Social Worker and give them a heads up that a family member is having difficulty with accepting what is happening.

The Chaplain and Social Worker aren't clinical, like the Nurse is. Many times families find it easier to trust them with helping them come to terms with these difficult issues.

I will gently introduce the concept of organ system shut down, and point out the fact that throwing food down on a gut that's trying to stop working causes physical discomfort. I've literally seen the light bulb go on over a few heads.

Frankly, taking longer than 30 minutes for a meal is exhausting and frustrating for all involved. And I'm talking 30 minutes for 3/4 cup of puréed food. For families who are still fixated on on food, I will introduce the 30 minute limit, and suggest waiting a few hours, then see if the patient wants some more, but not to be surprised if they don't. Sometimes as long as they feel like they're doing SOMETHING, they can deal better.

Ultimately, and this is important to remember, ultimately the patient will simply take matters out of everyone's hands. They will simply refuse to eat and drink, they will stop swallowing, they will sleep most of the time. If you're on top of symptoms and have the family be in charge of oral care so they continue to feel like they're doing something, it can work.

[Nascar nurse, ASN, RN]

When it comes to food - I try to point out to them how they can see the weakness and fatigue on the outside of the body - the great difficulty it takes to make even minimal movements. I then explain that the same process it happening on the inside even if we can't see it, meaning food no longer moves through the digestive tract correctly as that movement has also slowed down. It's similar to that miserable feeling after a huge thanksgiving dinner BUT in their case, it does not get better in a couple hours because it is likely to stay stranded somewhere with reduced mobility in the gut. For some reason they seem to be able to visualize that better and often lay off the food.

We also have nice booklets available in our office about what to expect in the last 24 hours of life - the last couple hours of life and so on. It can be a great kick starter for conversation and leave that with them to read again on their own.

[midazoslam]

I really appreciate all of your responses. It is really interesting to read how you all approach such a sensitive topic with your own unique, yet honest approaches.

[Jack Hazz, BSN, RN]

Yeah, I've asked some of my seasoned collegues here and we all came to the same conclusion. Break it to them gently in the most honest and acceptable way of telling them based on how and who they are. And I have been doing this mostly... But I definitely still have the sad feeling of being the bearer of bad news... I always thought, though, that everyone in hospice SHOULD feel the same way, as we are human, and feeling that way only shows we care and we are compassionate. As long as I get over it afterwards, then I should be ok. I've decided that when the time comes that I get numbed with deaths, I would be looking for a different job. I hope I am right with this chain of thought...

[Jensmom7, BSN, RN]

Yeah, I've asked some of my seasoned collegues here and we all came to the same conclusion. Break it to them gently in the most honest and acceptable way of telling them based on how and who they are. And I have been doing this mostly... But I definitely still have the sad feeling of being the bearer of bad news... I always thought, though, that everyone in hospice SHOULD feel the same way, as we are human, and feeling that way only shows we care and we are compassionate. As long as I get over it afterwards, then I should be ok. I've decided that when the time comes that I get numbed with deaths, I would be looking for a different job. I hope I am right with this chain of thought...

Remember, Hospice is all about choices.

I had a colleague once who approached Hospice on the same way one would approach Home Care. During IDT she would always complain that patients and families never followed her orders, and were noncompliant.

I never give Hospice patients and families orders. I give recommendations, based on symptoms manifested. If they choose to do something else, so be it. Then we talk about how best to manage the increased or new symptoms. Most of the time, they then decide that my original recommendation might actually be the way to go.

As long as what is being done doesn't present a clear danger to the patient's safety, I'm pretty laid back about giving them time to see the light.

Or as the daughter of a patient once told me, "I don't know why I'm so stubborn and always want to do the opposite of what we talk about. You're always right!" I just smiled and gave her a hug.

I've been doing Hospice for about 8 years. Haven't gotten numbed yet, and don't see it happening.

[toomuchbaloney]

Remember, Hospice is all about choices.

I had a colleague once who approached Hospice on the same way one would approach Home Care. During IDT she would always complain that patients and families never followed her orders, and were noncompliant.

I never give Hospice patients and families orders. I give recommendations, based on symptoms manifested. If they choose to do something else, so be it. Then we talk about how best to manage the increased or new symptoms. Most of the time, they then decide that my original recommendation might actually be the way to go.

As long as what is being done doesn't present a clear danger to the patient's safety, I'm pretty laid back about giving them time to see the light.

Or as the daughter of a patient once told me, "I don't know why I'm so stubborn and always want to do the opposite of what we talk about. You're always right!" I just smiled and gave her a hug.

I've been doing Hospice for about 8 years. Haven't gotten numbed yet, and don't see it happening.

Well said.

Hospice is THEIR care, THEIR plan, THEIR goals.

I don't have to agree with them or even like them. I am not the one dying or preparing to say goodbye to my loved one. They get to decide how messy or how graceful the last months, weeks, days will be.

I will educate my chaps off relative to feeding and other sensitive end of life topics. But in the end, it is their choice based upon their culture, their faith, and their individual capacity for empathy and critical thought under duress.

Hospice is a challenging and terribly rewarding specialty.