August 28, 2008
Who Tells a Patient’s Family That Their Loved One is Dying?
Imagine the following situation: You are assigned a 91-year-white female, admitted with urosepsis, requiring mechanical ventilation and intubation. Despite IV antibiotics, fevers jump through the roof along with climbing WBC counts and bands with a left shift. Within hours, Levophed is infusing at 60 cc/hr, NS is running wide-open, urine output stops flowing, and acrocyanosis arrives. Dopamine is added. Pitressin comes next. Soon you run out of electrical wall sockets as more inotropic drug support is added to sustain life.
The family hovers outside the door, without any sort of DNR discussion with the medical team. As the night wears on, the patient looks paler and paler, her cardiac rhythm now shows major ST depression leading way to a wide complex slow ventricular rhythm. By morning the patient’s systolic blood pressure is near 54/?, and she’s unresponsive as you provide oral care. Yet still the family "wants everything done." But there is nothing more to do. Palpable pulses barely exist. Mottling creeps along her limbs. There is no life.
The two residents seek to place a new arterial line instead of sitting down with the family to initiate a discussion about medical futility and comfort care. The nurse mumbles to the team, asking them to talk with the family about death and dying all night long, to no avail. The family continues to wonder in the hallway, hovering outside her room as her HR slowly begins to drop. They want dialysis now.
Still, no one talks to them about DNR options. No healthcare proxy exists. If you were in this situation, what would you have done? Does a nurse have the right to tell a family about DNR options or should it remain a discussion with the physicians?
Some related resources:
we should give the correct information, but we are quietly conveyed to the patient's family did not panic. however, the patient's family deserve to know the correct information about the state of the patient.
Posted by: nursingbegin | Feb 17, 2010 9:11:12 AM
I do think it should be up to to physician to discuss with the family for formality reasons. However, the nurses caring for the patients typically have a rapport with the family due to the intensity of the situations. Especially the one listed. Sometimes I think the family may be more receptive to the nurse bringing up the discussion, because they see all the efforts being done to their family. The idea of DNR doesn't mean do no treat. Which is a big misconception I think to many families. Hospice should be some where in the discussion when the patient is so sick and there is no sign of recovery. The patient nor the family needs to suffer watching grueling procedures happen to the patient needlessly. I just wish more people: nurses and doctors would bring this word to the table sooner.
Posted by: Lorri | Feb 19, 2009 2:28:12 PM
How many nurses work in hospitals, etc. in which they would be criticized for initiating the advance directives discussion?
Experienced nurses are morally obligated to initiate the conversation. "Have you talked about end of life circumstances? Your loved one is critically ill. The chances of returning to his/her former quality of life are slim." These are non specific statements that are appropriate in the ICUs with elderly chronically, critically ill.
Posted by: jan mecklenburg | Sep 25, 2008 10:51:14 AM
As much as I am a patient's advocate, I would still like to ask/consult with the physician before approaching the family's members to inform them about the possible DNR option. I agree with Lucy that dying is a part of life. However, it is not to us to determine that at a point in time DNR option would be "right" for that patient. It is more of the physician's call and the family's members.
Posted by: Thao Nguyen | Sep 19, 2008 12:44:13 PM
In the case I described, there was no health care proxy. It alo seems that there is increasing lack of discussion about comfort care, death and dying as a natural process within the ICU settings of late by the Attending physicians.
Resuscitating a patient filled with metastatic cancer I think is torturous for the patient and family.
Is the same occuring in your medical facilities ? Why this fear about death and dying discussion in America ???
Posted by: beka | Sep 17, 2008 3:09:42 AM
Sad to say, I have been in this situation too many times, which is one of the reasons I left critical care, moral distress. After being an ICU nurse for 8 years, I found my passion truly is palliative care. (This is written in the present tense, however, I have become a primary care NP in hopes of bringing palliative care to their setting to avoid situations like this). However, while in critical care, once I found my critical care voice, I learned very quickly to never wait for a doctor to start discussing DNR status, they either don't have the time, or don't have the expertise as I practiced in a teaching/research/education unit). I have never had an intensivist get upset with me. (However, I wish I could say the same for surgeons and cardiothoracic surgeons.) But the intensivists thank me for getting the conversation rolling along. I invite the family in as I want them to see how much we are trying to save their loved ones life. In doing so, I can continually keep the family in the educational loop. As I work, and their are usually 2 other nurses in the room helping me titrate the drugs, I explain what each drug does for the patient, why they need it and what this means in terms of living or dying. I explain to them that what all this means is that your loved one is on total life support and that without these drugs, your loved one would not be with us right now, they would be dead by now. And yes, I use the dreaded "D" word. (Some people think this is cold, callous and wrong, but, we have an elephant on the dining room table and no one wants to acknowledge it but the bedside nurse caring for the patient and knowing the outcome.) Somewhere along the line, I gently ask the family if the patient ever discussed what she would have wanted in a situation like this. Had she ever discussed total life support? Had she ever discussed her own death and what she envisioned her death being like? Did she want to die in a hospital, hooked up to so many tubes and machines and no loved ones around her? I help them think about what she would have wanted. 9 out of 10 times, they would not have wanted to be on life support and so we can gently start discussing how we can turn our care to comfort measures, explaining to them that this is not do-not-care, but, to help them transition into death comfortably as possible and with as much dignity as possible, surrounded by their loved ones. If they want everything done, then, we talk about what that means to their loved one. Being 91 years old, her bones are frail and etc...our intensivists can refuse, due to medical futility, to actually physically code the patient and seeing as we are already chemically coding the patient, make a call, nothing more to be added and no more titration of any drug.
Posted by: Nancy | Sep 6, 2008 8:54:16 AM
as Kathleen said . one of our role is client advocate. and it relies on us to represent the patient. but the question of opting for DNR has always been a dilemma. my friend just said who are we to decide if its time to give up. our duty is to assist the client with all what we have to wellness or a peaceful death.
but by providing options of DNR we are trying for bringing the client to a peaceful death. at this situation the nurse may suggest DNR options.
Posted by: ashish | Sep 4, 2008 1:48:12 PM
Personally I feel it is the nurses job to prepare not only the family but the patient if I believe that death is unavoidable. To do this takes empathy and an ability to be completely truthful about every option available. As the nurse caring for the patient I would have my resource nurse take over care and I would call a family meeting..once the meeting is called the doc always feels like they have no choice but to be present. I never give a doc an option to NOT be involved and I don't ask their permission because in my experience if you give the doc an out they will take it and you will be left holding the bag.
Once in the meeting we always begin by discussing everything that is wrong with the patient and where we are in treating it or if we are failing to be able to treat it. Usually it is a long list and we take our time explaining it in laymen terms. We use diagrams and a black board if we have to.
We go in depth about side effects of medications and treatment and what the outcomes of their use will be even if the patient survives.
Families in my experience react incredibly positively by being completely and thoroughly involved at their level of understanding. We discuss what CPR actually is and what can happen to a fragile body if we did it.
Most importantly we offer options in resuscitation if they are adamant and we are clear, very clear that this is the ONLY thing we will be willing to offer.
We try never to appear powerless or indecisive about the treatment plan because THAT is why families get angry or confused.
When they know what is planned and what is going to happen and what the outcomes are going to be their stress drops and they are less afraid of what is going to happen.
"Do everything" always comes from a place of fear. They have no idea what "do everything" even means. As health care professionals it is our job to define for them what do everything is and sometimes it means creating an atmosphere of calm and peace with their family and maybe their minister and helping them die in peace with grace. That is "doing everything" too.
That is the purpose of the family meeting when a patient appears to be dying. It is the nurses ultimate responsibility to make that meeting happen and it is the nurses responsibility to make that meeting deeply fulfilling for everyone there and that includes the doc and the nurse.
We all need to stop being so afraid of dying especially considering all these religions that promise so many wonderful things waiting.
We in fact are so proactive where I work that prior to any elective admission our patients have to fill out their DNR status before they get a bed. In emergencies we of course cannot do this but that is where the meeting comes in.
We have also taken a new direction and we never talk about withdrawing care anymore. We talk about stopping our interference in a natural, inevitable process, we talk about getting out of Gods way if the family and patient is religious or we say that nature is taking it's course and it is stronger than we are.
Withdrawal of care or any term that implies that the family has to make a decision to end their loved ones life is strictly forbidden because it's a lie .
I can honestly say that in the majority of the meetings I have been a part of we haven't even needed to talk about DNR status as it is understood by the end of the meeting that we have changed our focus and direction of care to something entirely new. We then get the family in to witness this change in care. We try to create a cocoon for the family to pray if they want, to play music if they want..we go all out to meet our new care plan and when the family is ready we get out of natures way and turn off the drips and machines and we let the family close to support and say their goodbyes.
It is an art and because I believe that for ten years it's been my job to help families and patients meet the end with grace when my colleagues feel that they just can't do it.
It is a privilege and an honour and it is one of the most important jobs we do as nurses.
Everyone alive right now wants a good death, a dignified, painless graceful exit. It's our job to make sure they get it.
It is a basic human right and I don't have to ask for anyone's permission to discuss how we can provide what everyone wants when they are dying.
Posted by: mo | Sep 4, 2008 12:39:29 AM
I often find that MD's are reluctant to initiate this discussion with family members. I believe that some see it as a sign of failure. While others, as harsh as this may sound, see it as taking too much time in a day that is already packed full. Like the other posts before this one, I have yet to find one MD that has been offended by my speaking to a family to see what their feelings were on DNR status. They seem to be relieved that the door is already opened and ready for them to complete the discussion. As an educator for my floor, I am also able to keep booklets that are available to explain the different code status' in an easy to read format for families so that they may make an informed decision. Our staff works as a team, so if the patient's primary nurse needs to have a discussion with a family, the other nurses step in and take care of her patient's. We want that family to know they are special and to feel comforted at all times. We also want them to have familar faces to turn to if they have questions. When the time is near for their loved one, we call the sister (nun) for our floor to come and sit with them and pray. We leave every day knowing that we have treated everyone as we would want our own families treated.
Posted by: VA | Sep 3, 2008 10:38:01 PM
It is very distressing how many times an older patient must go through uncalled for medications and treatments before they are "allowed" to die. Dying is a part of life , just like birth. Doctors are inadequately trained to let go, so it ends up in the nurses' hands to assist the patient and family. Dying with dignity and comfort is the ideal, but how many times do we fail to provide that?
Posted by: Lucy | Sep 3, 2008 11:43:41 AM
As a nurse, I do not feel like I need anyone's permission to deliver health care information or counseling when I assess and perceive unmet health needs on the part of patients or their families. I have written extensively about this subject as it relates to breaking bad news to patients and their families and have provided hundreds of hours of training to nursing and medicals students, as well as licensed health care providers. Never once has a physician express anything to me but relief when I have had the code or hospice conversation with patients and their families. They, like us, are victimized by living in a death-phobic culture, and if they do not make it their business to learn about death education, they continue to be woefully undeprepared to do so, as the SUPPORT Study of the mid-'90's continues to bear out. I encourage all my colleagues to empower their patients and families by empowering themselves to ensure that dying remains necessarily a sad situation, and does not devolve into a bad one.
Posted by: Patrice Rancour | Sep 3, 2008 9:45:59 AM
As an ICU nurse then manager of many years, I advocate that if the code status has not previously been discussed with the patient or family prior to transfer to the ICU, it should be address as soon as possible upon arrival to ICU. If the nurse at the bedside is too busy, the charge nurse should assist. First step should be checking with medical staff, but in many hospitals, they are not always immediately available, or, in the middle of the night, the on-call MD may not be familiar enough with the case. Nurses should be proactive in addressing code status. The Golden Rule always applies: treat patients like you would want to be treated.
Posted by: KLee | Sep 3, 2008 8:50:39 AM
Well as a night shift RN/relief charge on med-surg floor. Many of my coworkers as well as myself have approached families as well as the physicians to start this conversation. When we get pt's in their 90's from LTC still full codes and look terrible, the subject needs to be discussed before you do end up coding someone. In my small town hospital someone from every floor responds to Codes, we are the ones that are responsible for families, so yeah we do it all the time and NEVER have we asked a DR for permission before approaching this topic with the pt or family. Does that mean it's our job??? Well I guess I dont really no the answer to that one.
Posted by: Nightshift | Sep 2, 2008 8:39:51 PM
As a patient advocate I feel that if the M.D doesn't bring up the subject or in a case I experienced refuses to talk to the family about DNR's it is up to the RN to let the family make a informed choice. I agree with the previous post, the last hours should be spent peacefully saying goodbye not spent in fear or angry.
Posted by: linda | Sep 2, 2008 8:37:28 PM
One key thing in this event is that the nurse could have delegated responsibilities to her co-workers. Even asked for help.So, time could be sent with the family.
But, DOES the nurse have the right to tell the patient's family that their loved one is dying and nothing more can be done. Morally YES. That's the big issue? And how do you do it, when the physician refuses to take on that responsibility?
Posted by: beka | Sep 2, 2008 2:26:08 PM
As a nurse, one of my role is to be a pateient's advocate specially to familly of the terminal ill patient, but during when death comes it is always the physician on call duty to pronounce death and inform the family, the nurse should only comfort and be an advocate on the bereaved family. the nurse should guide the family as well.
Posted by: Georgina E. Palmos | Aug 30, 2008 3:56:10 PM
I am an ER nurse who has also been a Hospice nurse off/on from the time I was a graduate RN. ALL of that time, I have never once thought twice about "asking for permission" or if it was my/our "right" as nurse's to discuss advance directives/DNRs/impending death with patients and/or their families. I have always either initiated the conversation if the MDs were reluctant (ususally due to fear and being unfamiliar with the situation plus many time, in their traing, death equals failure) to or went directly to the MDs and their team and suggested it if they had not. Even in the ER - especially in the ER! - where we are supposed to "do everything" and do but sometimes it makes no difference. For intstance, the 55 year old man who comes in in arresst who we code for 30 minutes or so, knowing from the beginning the outcome will be poor: who tells the family waiting outside the code room? Well, it should be the MD but sometimes it has been me. Many times I have brougt in chairs into the code room and sat with the family for a few minutes and explained everything possible was done. Is it my "job"? I don't know; I think so. I think that nursing embodies caring for and educating patients and their families regardless if it is a terminal situation or not. Do I /will I ask for "permission"? I don't think so. Having been both an ER and a Hospice RN, I have more experience than most RNs and MDs combined in dealing with discussing DNRs and death/dying. I try to use that to teach my coworkers - be they residents or fellow RNs - and to ultimately teach the family so that their last hours with their loved ones are filled more with peace and fond remembrance than anxiety, fear and anger.
Posted by: Kimberlee | Aug 29, 2008 6:10:37 PM
I live in the Pacific Northwest, USA and I used to work in hospitals. I am so thankful that I now work in a long term care facility specializing in Dementia care.
The reason? I can take care of my patient AND their families in the compassionate, caring way they deserve at the end of their life. I am usually the one who talks to families when I first notice that a patient is on a terminal decline. It might be weeks before their death or sometimes only a day if they have had an acute decline. I am there to explain and support the families throughout the the dying process. The most important and rewarding aspect of this process is telling families that the last sense to go is hearing. I encourage them to talk to the patient and relive fond memories of their lives together. My families tell me how truly uplifting this is and how it turns the dying experience into one that can be remembered fondly.
When I worked in the hospital, nurses were forbidden to talk to families about the patient dying - unless given permission by the physician. An occurance I never experienced. This led to families becoming coming extremely anxious and/or hostile. Such a sad thing that those family members had to use up the last hours of their loved ones lives in anger instead of in love.
Posted by: Vickie | Aug 29, 2008 2:27:16 PM
As a family member, I would want the truth. That's the bottom line, as hard as it is to hear.
Posted by: Elaine Williams | Aug 29, 2008 12:32:22 PM
Kathleen is right, the nurse caring for the patient would be too busy titrating inotropes!
I think we should (and we do over here in Oz) touch on these things with family members. We are not bedside-bound slaves but part of a team and we should put the patient first. Often families want to talk about DNR options but are too scared/intimidated/stressed to initiate these conversations. We usually spend most of the time with them so are in a good position of trust when it comes to broaching such sensitive topics.
Posted by: aj | Aug 29, 2008 2:09:38 AM
It's hard to imagine that any hospital would not have a chaplain or patient advocate available - even a nursing supervisor. I don't see how a nurse in this situation could have the time to speak with the family, but if possible, yes, I personally believe that's what he/she should do.
It's not even about having the "right" to do so. It is what we do as professionals. We are patient advocates, and in this situation advocating for comfort seems like a genuine Nursing responsibility.
Posted by: Kathleen | Aug 28, 2008 6:52:33 PM
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