What do we talk about when we talk about dying?

[VTRN774]

]I work on a med-surg floor in a small community hospital. I have observed that when doctors (sometimes nurses too) talk to the family of a patient who is not going to get better, they often retreat into clinical language that the family doesn't understand. I've seen some families convinced their loved one would recover when the doc was certain he'd explained she wouldn't, and other families that were left uncertain and confused. I'm curious about what other nurses have observed. What do doctors and nurses say when we talk to families about dying? What don't we talk about? What do you think we should be doing for our patients that we're not?

[kathy313]

When I was an aide, there was a gentleman on my assignment who had been hospitalized several times over a short period, he always seemed to end up on our floor. Very nice man, wonderful family. He had lung ca, it was aggressive and he and his physician treated it as aggressively as they could.

His doc came in one day and sat at the bedside with him, he told him that he was sorry, he couldn't do anything else. He also thanked him for letting him be his physician, for allowing the chance to know him and his family. He sat with the patient for quite awhile.

I was and still am touched by this. There was no rushing to get out of the room, no talking in clinical terms, you could tell this physician felt what he said.

I think for many of us, we want to help the patient feel better, we forget sometimes that helping them and their families through this process is also a needed part of care. We get scared and uncomfortable with dying especially if we can associate the patient with someone in our life, (parents, siblings....).

[netglow, ASN, RN]

His doc came in one day and sat at the bedside with him, he told him that he was sorry, he couldn't do anything else. He also thanked him for letting him be his physician, for allowing the chance to know him and his family. He sat with the patient for quite awhile.

What a knowing guy, this MD. :)

[tewdles, RN]

]I work on a med-surg floor in a small community hospital. I have observed that when doctors (sometimes nurses too) talk to the family of a patient who is not going to get better, they often retreat into clinical language that the family doesn’t understand. I’ve seen some families convinced their loved one would recover when the doc was certain he’d explained she wouldn’t, and other families that were left uncertain and confused. I’m curious about what other nurses have observed. What do doctors and nurses say when we talk to families about dying? What don’t we talk about? What do you think we should be doing for our patients that we're not?

IMHO we need to say more, earlier, and in plain language. Elderly people with chronic life ending diseases should never be surprised that their COPD (or like disease) is killing them...when they are it is either a reflection of a primary medical team in denial or a patient in denial. Medical professionals need to refrain from giving families and patients false hope for a recovery or a cure. We should talk to people about quality of life, and dignity, and peace, and comfort. We should not be encouraging most elderly people to engage in involved and invasive medical procedures which MAY offer some long term benefit but which WILL SURELY generate great discomfort and disability in the short term. Too many final days and weeks are wasted in hospital rooms and agony rather than sitting in the rocker with the grandkids.

We should measure our words by how understandable they would be to a 12 year old...if you are using 4 syllable words to tell someone they have a terminal illness you need to pinch yourself and take off your white coat.

Seriously, because we cannot cure a disease which will kill the human suffering from it does NOT mean that we have nothing to offer! Everyone turns a corner in their life where they are on the dying side of the life/death equation. That does not mean that the remaining months or years are devoid of joy or fun or value. It clearly does not mean that the person must be uncomfortable, or suffering, or a burden on their family....we need to tell them all of this.

[VTRN774]

"We should not be encouraging most elderly people to engage in involved and invasive medical procedures which MAY offer some long term benefit but which WILL SURELY generate great discomfort and disability in the short term. Too many final days and weeks are wasted in hospital rooms and agony rather than sitting in the rocker with the grandkids."

Wow, you said this so well. I see this "encouragement" often. I think the doctors honestly believe they HAVE to offer options but the language they use so often misleads the patient and family into thinking an invasive procedure will lead to a better, longer life. Unfortunately, we so often see it's not so, that instead patients and families suffer more.

[Nurse SMS, MSN, RN]

When my son was dying (he was 13, 4 weeks in PICU after getting cytomegalovirus post allo SCT for relapsed AML) the physician told his father (when I was not present) that we should consider DNR. His father did not realize this was the doc's way of saying "this is it, we've done all we can do". I did, but probably only due to my medical background.

I agree, it needs to be put more bluntly. It can be honest and still be gentle and kind. The two are not mutually exclusive. I am aware, though, that sometimes people are not ready to "hear" no matter how blatantly it is said.

[tewdles, RN]

I appreciate your comments, VTRN774. With the fear of "death panels" it is often difficult to find people willing to speak about this topic directly.

IMHO, we must give our elderly patients and their families excellent medical information, in language they can understand and we should not encourage them to take risks with their immediate health. They are old. They, typically, are much more medically fragile than the average adult. The average 80 yr old does not have a life expectancy in excess of 10 years. Our care and education should be focused on the person as a whole in the moment - FIRST. As we advocate for our elderly patients we should not be easily wooed by the temptation of longevity if there is a cost exacted in the moment. I see, too often, where we professionals have been inconsiderate of the impact our recommendations may have on the immediate quality of life in the HOPE of later benefit.

And yes, medical treatment choices are owned by the patient and family exclusively. They choose to either have or not to have the invasive procedure or add this new medicine...we do not. Having said that, however, most elderly patients are very much influenced by the recommendations, education, and guidance of their primary health team...especially the physician and the nurse. So we can and do impact the health choices our patients' make...that is a good thing.

[FlyingScot, RN]

The other thing we often fail to do is to tell people what actual dying is like. Especially those people charged with making the difficult decision to make a loved one a DNR. Just as the American public has a twisted view of the nursing profession thanks to television they also have unrealistic expectations of what the dying process looks like. Many seem to think that their loved one will be beautifully done up, lying on snowing white linen with family gathered around in the gentle silence. The dying one will open their eyes one more time, whisper "I love you" followed by being bathed in a golden glow of light and a hint of angel songs in the background. When in reality we all know there often is rattling, gasping respirations, sucking chests, moaning, loss of various bodily functions (some that don't smell too good), foaming at the mouth, glassy eyes, cyanosis and other really unpleasant things for a family to experience. I think this is the main reason so many DNRs are rescinded at the moment the dying process begins. I remember my grandmother's death throes and they scared the pants off me even though I was a nursing student. Now I'm not advocating telling the family that death is "really gross" or anything like that but gently explaining some of the things they might see and what we or they can do to ease those "symptoms" (if you will) goes a long way in making the dying process less frightening. It also speaks to family centered care because during that time it's the living who need us most.

[leslie :-D]

When in reality we all know there often is rattling, gasping respirations, sucking chests, moaning, loss of various bodily functions (some that don't smell too good), foaming at the mouth, glassy eyes, cyanosis and other really unpleasant things for a family to experience..

you bring up a good point.

the type of deaths you speak of, are those that would happen with trauma and the death is unexpected.

thankfully however, many folks die with all of the above, well-managed.

a family member wouldn't witness any gasping, moaning, foaming, sucking, rattling.:)

if handled well, dying really can be the type of loving, peaceful scene you spoke of.

truly.

leslie

[OldnurseRN]

I make rounds with the doctor and before he has a chance to leave the room I ask the patient and the family if they understand that the doctor has told them ..... and I para-phrase back what he/she has said. I can usually tell by the expression on their faces that they haven't quite grasped what they were told and this allows a dialogue to open.

[Zookeeper3]

"has your ........ ever talked to you about their wishes about being put on life support, a breathing tube, a feeding tube, having someone shock their heart to restart it or pump hard on their chest to restart their heart....."

And what if, I place them on life support and we can't get them off and they will only survive their lives with a trach, vent and feeding through a tube,.... would your love one want that?

I have nothing left to do when their heart stops but push on their chest, break ribs, put a tube down their throat and possibly shock their body with high levels of electricity..... only do to do this over and over again... until you tell me to stop.

"I can provide instead a comfortable death, with pain meds, you holding their hand at the bed and give you privacy to tell your loved one everything you wish you had, or feel the need to say....."

FINALLY, "once you place this breathing tube, are you prepared to have your loved one trached, in a nursing home to spend the rest of their days in this state until they die". "The alternative , once it is placed is pulling it and letting them die, which is a hell of a decision to end your loved ones life.... it's time now, can we allow them to die with dignity?"

And worse, no, you need to be here in this room to see what you are asking us to do as we recusitate your family member, when you are satisfied that we have done enough, let me know and we'll stop.

I hate being an ICU nurse most days, because I say these words daily and we simply no longer let the people we love die in peace and with dignity. And yep this is an angry post. I hate my families that torture my patients because they are too selfish to let them die in peace. DONE!

thanks for letting me vent and share all.

[ONCRN84]

Sometimes you can say it til your blue in the face in all kinds of plain language and they still won't hear it.