Not ready yet

Much is written about the importance of doctors and patients talking about dying. The harms done by not talking about it are many, and have been described in this blog many times. Inappropriate resuscitation attempts, futile spells in ITU that the patient would not have wanted if asked, inaccurate guesses by distant relatives as to what their priorities are… for want of a conversation.

So as doctors we have become more comfortable and ready to have these discussions. We identify clues that the end of life is approaching, and rather than walk on leaving nature to do its worst, we let the patient know. We accept the challenge of breaking the news, even if the clues have been there for other doctors to see for some time. The patient is under our care now – it is our responsibility to make the intervention.

Those of us who feel strongly about the harm done by reflexive escalation or lazy evasions may have a lower threshold for engaging in end of life discussion than others. We may judge our colleagues harshly for dodging the difficult conversations.

But sometimes, we get it wrong.

 

***

 

Dr C looks through the results of recent investigations. The patient, Jean, has been admitted with heart failure, a longstanding diagnosis. Her performance status has deteriorated over the last three months, and she is NYHA grade III (‘Marked limitation in activity, even during less-than-ordinary activity, e.g. walking short distances. Comfortable only at rest’). She has spent four of the last ten weeks in hospital. She is 78.

Dr C, who has never met her before, decides… it is time to talk about dying.

 

 

Dr C: Jean, I’d like to speak with you today, about the future.

Jean: Of course. Take a seat on the bed.

Dr C: Your heart. It’s getting worse. I’m worried about it. It seems to me, it’s getting weaker and weaker. On bad days, it’s barely strong enough to keep you going.

Jean: I manage.

She’s defiant, of her illness, of her situation.

Dr C: Has your doctor spoken to you about what might happen if it gets any weaker?

Jean: No. Should he?

Dr C. Well, it doesn’t matter, we can speak now. I’m worried that if there’s a crisis you may die… of heart failure. I think we need to discuss this.

I’ve said it, the D-word.

Jean:  You’re the first to mention it.

She’s pushing back, she doesn’t want to have this conversation. I feel uncomfortable. But I’m going to carry on. The situation demands it.

Dr C. What family do you have Jean?

Jean: My son. He lives in Newcastle.

Dr C: Is he coming to visit?

Jean: He doesn’t know I’m here yet.

She’s strong, doesn’t come across as vulnerable. I’m not going to suggest we wait for the son to come down…

Dr C. So, Jean. I’ll be frank with you. Many people with a heart as weak as yours do not survive longer than a few months. It’s quite possible that you only have that much time left. I think it’s important that you know this, and…

Jean: How long am I in hospital for then?

This is hard! I feel like I’m forcing it on her. She’s clearly got mental capacity… is she just evading the issue? Do I go on? I must. And I must be clear. I must be blunt.

Dr C: OK. Basically, I think you need to know that you might be dying. And I think your family need to know this, so that you can make any plans, or decisions.

Jean: Like what?

Dr C: Well, for instance, if you were to deteriorate, and we could only give you comfort care… would you rather be at home, or…

Jean: Of course. I hate hospitals.

Not sure I’m doing the right thing here. She’s not getting it. But it’s my job to make her get it.

Dr C: So imagine, you get another chest infection, and the strain causes your heart to pump even less well… we make you as comfortable as possible, but you may not be able to communicate, so we, or your family, need to understand more about your wishes, where you would like to be, what you wouldn’t want… that way we can give you the best care.

Jean: So what do you need from me right now?

It’s not what I need Jean. It’s what you need.

Dr C: Nothing Jean. Just… just for you to think about it. The future. OK?

 

Jean is transferred to the heart failure team. Ten days later Dr C happens to pass her on the ward . Jean glances up, but does not smile. A member of the cardiology team stops Dr C, and, with an embarrassed look, explains that Jean’s son came in and caused quite a fuss. He was angry that a doctor told his mother she was dying, without him being there. He found Jean in a very depressed state. She said that the doctor is question was very matter of fact… ‘It wasn’t kind,’ the son said.

“But she needed to hear it,” replies Dr C, sighing.

“Well the son thinks not. Not yet.”

“When then? What’s happening now anyway?”

“We off-loaded her, she looks a little bit better. Going home tomorrow. Big care package.”

“And did you do a DNACPR?”

“She didn’t want to discuss it. But we did it.”

“And pall care?”

“We’ve asked the GP to refer in the community…”

Dr C walks away. She is sure she was right to start that conversation. She is sure that her intervention, although painful, has set in motion a series of conversations and decisions that will, ultimately, benefit the patient. But the fact is, she has caused some harm, in the short term. Harm to Jean – who was upset; harm to the son, who walked into the aftermath; and harm to herself, who now feels like an evil-doer.

Wouldn’t it have been simpler, in this case, to respond to those early vibes – Jean’s evasions – and walk away? Isn’t it appropriate, sometimes, for a patient’s desire to avoid the hard questions to be respected, even it means they meet death in a relatively unprepared way. Even if it means that there is no DNAR decision, no stated preferences.

Or did Dr C misjudge things?

At the end of the day, it was Dr C’s opinion – her accumulated wisdom on such matters – vs the patient’s own instincts. The patient’s preference in fact. A preference not to engage, until the writing was truly on the wall. A preference Dr C tried to overturn.

As a result Dr C became a little more cautious, and a little more ready to leave things as they are. Her career would probably see many such corrections, one way or the other.

(Fictional case)

 

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3 comments

  1. Really excellent and important post. Thanks so much!
    I’m not sure who is not ready yet?
    It’s surely not just Jean and Dr C – who will inevitably get better at these conversations.
    Jean’s son might like it even less if his mum has CPR (a quick death is one of the less unpleasant potential outcomes here)
    What about Jean’s regular heart failure doctor? Who hasn’t apparently mentioned the D word yet?
    Her GP? Who may well have an idea about Jean’s ‘goals of care’, even if no-one’s calling it that. And who might already have filled in a form for the OOH service?
    What about the print media – who keep on bewailing the lack of patient involvement – which is what Dr C was trying to do (Beed M, de Beer T, Brindley PG, 2015)?
    Or the TV media – who have stopped showing unrealistic resuscitation CPR success rates – but are now showing unrepresentative people having CPR for unrepresentative reasons – and ignoring the medium and longer term outcomes after those lovely TV doctors and nurses have done their stuff in the ED.
    Maybe it’s Doctors more generally – her colleagues didnt support Dr C (thinking you’re ‘an evildoer’ may not be the most effective learning method)
    Or is it perhaps the whole of society?
    Like you, I’m not suggesting a simple solution here.
    And this is a very large elephant to take on.
    But shouldn’t we at least start to broaden it out from the one-on-one doctor patient relationship?
    Best wishes and thanks

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    1. Thanks for this Caroline, and thanks for reading. Yes, I agree there’s a much wider cultural issue beyond just the two people in my scenario. I tried to explore how other parties sometimes avoid, or just don’t consider, having the discussion during the months that lead up to these crises in my booklet ‘Why did that man receive CPR? An inquiry’. But at the end of the day, perhaps all we can do is open the door to the discussion, but cannot push a patient through it…

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  2. Hi,
    I just read your piece for Intima about having a terrible problem not being able to abandon the passive voice when saying “sorry.” Here’s a little motivation, since you seem like a basically good guy. I was in a group of multiple rapists/murderers for a couple of years, and the clue that one of the guys wasn’t ready to deal was if he…couldn’t….say..”what I did” and instead HAD to say, “what happened (to you, except the person was usually dead so it wasn’t a direct experience like you had)”. Step one, make yourself ready. Then Step 2 is apologize. Sorry if there are legal considerations that force you to artificially hasten the process, but at least you have some support and a pathway to do it. I myself enjoy the impact of languages, like for example Spanish, where chairs break themselves (se rompio). It is good that you notice your reluctance, now lighten up and remember that apologizing is the second most fun you can have for free, the first being sex.

    Like

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