May 10th, 2012
Three Guideposts for Talking to Loved Ones After a Patient Dies
Harlan M. Krumholz, MD, SM
From my earliest days in medicine, notifying loved ones about a patient’s unplanned or unexpected death was among my most stressful and challenging responsibilities. I recognized that my words at that critical moment might stay with people for a long time, maybe the rest of their lives. What I said could soothe and provide comfort — or fester and cause pain. I also realized that, with the right words, I just might be able to preempt the pathology of blame and guilt that can surface after the initial shock passes. In short, I quickly came to see that my responsibility to a patient does not end with his or her death. It extends to this all-important conversation with the people left behind.
So I came up with three simple steps to allow me to help those who have experienced a loss. I am always honest during these conversations, but I use my three guideposts to chart the way. I suggest that my students and residents use them as well, and I share them humbly with you here.
1. Say something positive about your patient. It is your responsibility to know your patients as people. You should have something personal to say that is dignifying, that speaks to the person’s courage, wisdom, or humanity. Make clear that this person was not just another patient, but someone with admirable qualities. You can find the best in everyone, and this is an opportunity to share that insight with the people who will appreciate it deeply. I can remember telling family members about how the person treated me kindly, showed strength in the face of immense health challenges, or revealed wisdom. Usually I have not had to think hard to recall something that not only compliments the person but also illustrates the personal connection I had with him or her. If you never formally met the patient, perhaps in the setting of a cardiac arrest when you are covering for other doctors, take a moment to find someone in the hospital who knew the person, even a detail from the chart. You can always find something that will add dignity.
2. Try to convey that the death was not painful. Of course, your responsibility is always to work hard to diminish suffering by palliating symptoms and mitigating pain. But actually mentioning that your patient did not suffer can make a huge difference to loved ones, who always worry about this issue. Ideally, this was the case and you can identify the specific steps that were taken to prevent or reduce suffering. That kind of specificity matters.
3. Most important, seek to alleviate guilt. Most people will harbor some belief that they contributed to a death. They may think that they could have pushed the patient to see a doctor sooner — or should have recognized the early signs of illness. I have heard many people say (mistakenly) that it was something they fed the patient, or some stress that they caused. Discover who is holding on to such guilt and set them free. Help them understand that it was not their fault, and give them the gift of knowing that the doctor is certain about that fact. You must be honest, but it is almost always true that these feelings of guilt are unfounded. Even if there is some possibility that the loved ones could have done things differently, this moment is not the time to discuss that. Be kind and sensitive to what they are experiencing and the concerns they have. Your responsibility to the patient does not end until you have intervened to alleviate this type of guilt. Your words have the power to heal or hurt and will often be remembered for many years. You can set a family on a path of healing as they begin a journey of grief.
These three steps always help me to finish caring for my patient after death. Not everyone will agree with this approach. You may have your own, and I’d like to hear it. Also feel free to share specific stories about discussing patients’ deaths with their loved ones. What have you learned? What do you teach other caregivers who have this responsibility?
I always write a letter or note to the spouse or family. And, when possible, I attend the visitation.
If you really want to show you care, if possible, attend the viewing and express your sympathy to the grieving relatives. Sign the guest book. Kneel by the coffin and reflect privately. This always leaves a lasting impression. There is probably no better way of showing your sympathy, especially for a longtime patient. If you can’t attend, call the loved ones and let them know you are sorry for their loss, and send a sympathy card.
Our patients enrich our lives greatly. We often need closure ourselves after their deaths. If possible, I attend the visitation. I reflect with the family on the hard fought battle and how the patient faced that battle. If I have know the patient a long time, I tell the family how much I will miss seeing him or her and I invite the family to stay in touch. If the death was sudden I invite the family to call me or come meet with me in the future if questions linger.
These are wonderful sentiments – and truly show that the someone’s passing is not just another day – and reflects a caring and compassion that should be a vital part of our professional responsibility and privilege – and shows genuine respect to the family. A personal note for sure – attending whatever event there is (visitation, memorial) – while not always possible – is always appreciated and meaningful. These thoughts have improved upon what I wrote. Thank you.
Having an established doctor-patient relationship, even if it is only for a few days, as in the case of devastating illness, makes things so much easier! The horrid situation is coming out of the resuscitation room after a sudden death, and confronting the desperate relatives who are still harbouring hope, or have no idea whatsoever how serious things were. The only thing I would like to add is that the news should be given to the relatives by a senior, preferably with some silver hair…especially in a small town, where everyone knows the seniors and trusts them. As one of the silver-haired, even if I’ve just been helping to manage cardiac arrest as an anesthesiologist, I always volunteer to help break the news along with my junior colleagues, and the young colleagues are very grateful, and hopefully will help their juniors when their hair is silver…
Karen: I am so glad that you made this point – I have heard of situations where the youngest person was sent on their own to inform a family – without guidance – and with little context. When I hear of such a thing I wonder how it could happen. If the patient is not well known to anyone (perhaps because of the event was sudden and the patient was new – or because it occurred at a time when no one who knew the patient was around) it may be best for the news to be conveyed by more than one person – and with at least one more senior person in attendance.
These are great points of advice.
I am from Peru so I tend to do a lot of touching and hugging even to ‘Germans’ and ‘Norwegians’ in Minnesota that like their personal space and in general avoid close contact. In these contexts, when I have had a relationship with the patient and family, hugging — always authentic — seems welcome and corresponded and considered meaningful (at least this is my impression).
The bottom line from this for me is that any emotional manifestation must be authentic and expressed rather than repressed.
Authentic expression helps us express our humanity and it helps us cope. We must remember that the death of a patient is also a loss for us, and the words of the family can also alleviate any feelings of guilt or otherwise we might feel.
Dr. Krumholz refers to the challenge when the person who has just died is not someone we know, especially the cardiac arrest patient in the ER. In that instance, when family is present, I ask them if possible to tell me something about that person that is special to them, so I will know them better. Not infrequently, remarkable and moving stories are told. The family is thus able to share their love and experience in a way that prepares them for doing so again at the wake and after. And, for those of us who have just tried to help someone we did not have the chance to know, it can transform a difficult experience in a very meaningful way. Interestingly, no one has ever said no to my request.
What wonderful suggestions… it is so true that the best action we can take is active listening – and a willingness to show authentic emotion. Thanks Victor and Karen.
I would have to say that these are just about the only occasions nowadays where I feel the need to (literally) put pen to paper; if I’m careful, other people can just about read my writing! I’m relieved to find I generally do follow Dr Krumholz’s guideposts and pretty well in exactly the same order.