Pacemakers, Defibrillators and (Im)mortality.

Pacemakers, Defibrillators and (Im)mortality.

Cardiac Implantable Electronic Devices (CIEDs – a cover-all term for permanent pacemakers and implantable defibrillators) are becoming increasingly common in the population as a whole and therefore are becoming increasingly encountered by health professionals delivering End-of-Life (EoL) care. This can result in ethical dilemmas around switching off or modifying the therapies delivered by these devices.

There’s a very interesting article  with  2 accompanying editorials in this month’s JAMA Internal Medicine (the journal formerly known as Archives of Internal Medicine) looking at the potentially thorny issues around de-activating CIEDs.  All are free, open access.

The article, by Buchhalter et al,  is a retrospective chart review covering a 4 year period from 2008-2012 and looking at all patients who had a CIED deactivated at the Mayo Clinic in Minnesota.

Of note:

  • 159 requests for deactivation
  • 9 requests not carried out
  • 2 of the non deactivations were physician refusals (I found this particularly interesting).  In both cases the patient had a PPM and requested that it be turned off, which is a slightly different issue compared with turning off an ICD.  In one case the physician requested an ethics consult but the patient died before it could be arranged.  In the second case the physician refused to deactivate the device but referred the patient to another physician.  Again the patient died before the consult took place.
  • Of the remaining 150 patients who underwent device deactivation, 99% had a terminal prognosis (the one patient who didn’t was getting inappropriate shocks from an ICD)
  • Most of the patients had an ICD and only had tachycardia therapies stopped.  Some of them also had bradycardia therapies deactivated.  A small number of the patients were pacemaker dependant and had bradycardia therapies deactivated.
  • Half of the requests were from patients and half from surrogate decision makers (SDMs)
  • 57% of the patients had an advanced directive, but only one of them mentioned the CIED!
  • 27% of patients who had tachycardia therapies deactivated died within a day of deactivation, 71% within a week, 87% within a month.
  • Of those who also had bradycardia therapies switched off, 53% died within a day, 88% within a week.

The authors mention in the discussion that most of the requests were for deactivation of tachycardia therapies in order to avoid uncomfortable shocks at the end of life.  From an ethical standpoint, deactivating an ICD to me seems no different to being documented as Not-for-Resuscitation.  Deactivating a PPM, particularly in a pacemaker dependant patient probably requires a bit more discussion with patients and SDMs, but again would seem to me to fall under the umbrella of withdrawing life-sustaining treatment as opposed to actively ending someone’s life.

The first accompanying editorial by Butler and Puri was a better read, and a bit more emotive.  It begins;

As he lay dying in a hospital in San Diego, a 71-year-old retired commercial fisherman was shocked 10 times by his implantable cardioverter-defibrillator (ICD), convulsing in front of his wife, 7 children, siblings, and mother. For 2 days, no medical professional intervened. The device was deactivated only at his wife’s insistence. Afterwards, she wanted to know, “Why wasn’t there a sticker on his chart? Why didn’t someone write that order?”

The editorialists go on to discuss the issue of the increasing number of devices being implanted and how these might impact on EoL care.  They neatly sum up fragmentation of medical care (a problem encountered daily by intensivists, palliative medicine specialists, geriatrician and the few other generalists who happen to be left in the super-specialized hospital of the 21st century) and highlight the important of interprofessional communication.

The authors mention that only in 2010 did the Heart Rhythm Society state in  a guideline that it was “ethically permissible” to deactiviate a device, and they wonder when anyone will state that it should be an “ethical responsibility” to inform patients that deactivation is an option.  The authors conclude by postulating a way forward that involves increased training in communication skills and increased collaboration between cardiology and palliative medicine – a trend that is already occurring in many places.

One of the authors of the editorial, Katy Butler, has previously written on this issue from a very personal perspective in a New York Times Magazine article entitled “What Broke my Father’s Heart.”   This article was quite moving and well worth a read.  It’s always good to look at the health system from the perspective of a non-clinician, and Butler, a writer and teacher, does this eloquently and in a balanced manner.

Finally, in a really quite moving and inspirational editorial,  Matlock and Mandrola highlight the fact that delivering caring end of life care is just good medicine and that early communication with patients is the key to preventing many issues and suffering that may result from conflicts at the end of life.   With a couple of simple, to-the-point quotes they sum up the issue;

  • CIEDs do not confer immortality.
  • Death is not optional.
  • Deactivating a pacemaker in a pacemaker-dependent patient is no different than withdrawing a ventilator from a ventilator-dependent patient.

All 4 articles are thought-provoking, well worth a read and eminently relevant to those working in critical care or, indeed, any aspect of acute medicine.

The Daughter from California Syndrome

The Daughter from California Syndrome

What follows is an illustrative case (from my imagination) that everyone who works in intensive care, palliative care or geriatrics will at one time or another have experienced;

A widow in her 80s is admitted with pneumonia. She is moribund. She has a long history of complex medical problems including severe dementia and is looked after at home, full time, by one of her daughters. The daughter is unmarried and has given up work to look after the patient. The treating team discusses treatment options with the daughter and after a long discussion all involved decide that, while the patient never expressed any specific end-of-life wishes, her daughter firmly believes that she would wish to be made comfortable in the event of a life-threatening illness. The team and daughter decide that the patient will be admitted to a medical ward and receive comfort measures only and specifically that she won’t receive antibiotics, IV fluid or any invasive measures.

Then the Daughter from America shows up. This daughter hasn’t seen her mother for many years, doesn’t talk to her sister and isn’t aware of how much is involved in caring for her mother. She demands that her mother receive aggressive life-saving treatment and be transferred to ICU with instructions for full active treatment including CPR. She is verbally abusive to staff and her sister and threatens to sue the hospital and various staff involved in her mother’s care.

Sounds familiar doesn’t it? We’ve all encountered a case (or multiple cases) where there is discord amongst family members about what the most appropriate course of treatment should be for a patient who has impaired capacity to make decisions. Anecdotally it seems that most commonly it is the family member who has come from furthest way, who hasn’t seen the patient for longest, who arrives latest in the patient’s course; who has the most unrealistic demands. I have been calling this “The Daughter from America Syndrome” as America suitably far away from Down Under. Of course the distressed family member can be a son, brother or cousin and can come from France, New Zealand or Singapore. America is used purely as a metaphor. I’ve encountered this phenomenon so often that I even came up with an equation;

Unreasonableness = (Distance travelled x time since last seen x time since onset of current illness) raised to the power 2 if the relative has come from North America.*

Well you can imagine my delight when I saw my prejudices vindicated in a black and white in a serious journal. And I wasn’t far off with the name either, with the authors of a great little paper from the April 1991 Journal of the American Geriatrics Society describing “The Daughter from California Syndrome“. Molloy et al describe the syndrome using a typical vignette (similar to the one above) and then posits why this phenomenon might occur and offers strategies for when it does.

The Authors wonder if denial, guilt and anger makes distressed family members seem irrational. This could be compounded by often longstanding intra-family conflict.

The authors then offer some strategies for dealing with the difficult family, including:

– A family meeting
– Making sure that all health care providers provide consistent information
– Allow the family to deliberate for a fixed period and follow up if there is disagreement.

This is all common sense stuff that we all do anyway, I hope. They hilariously end with the throw away line “Finally, if all of these measures fail, consult the geriatric service. Everyone else does.” Gold.

They also touch on the role of the courts as an absolute last resort in such cases, and remind us that, as health-care providers, we are under no ethical, or legal, obligation to provide care that we believe to be futile or harmful.

All in all a great little article (admittedly it’s a bit hard to find – you might have to actually go to the library) that’s well worth a read.

J Am Geriatr Soc. 1991 Apr;39(4):396-9.
Decision making in the incompetent elderly: “The Daughter from California
syndrome”.
Molloy DW, Clarnette RM, Braun EA, Eisemann MR, Sneiderman B.
Department of Medicine, McMaster University, Hamilton, Ontario, Canada.
PMID: 2010590

*I’m not anti-American. Far from it. I even drink IPA. It’s just that most of the far away family members I encounter are from the USA or Canada. I suspect if I was in the USA I’d be adding an Australian factor.

It’s ethically, morally and legally OK to not do CPR (sometimes.)

It’s ethically, morally and legally OK to not do CPR (sometimes.)

Intensivists and trainee intensivists of the world, brace yourselves.  You’re about to re-live a  telephone conversation that you have nightly and that makes your blood boil every time….

Ring, Ring…
You: “Hello intensive care, registrar speaking.”
Caller: “Hello, this is the most junior doctor in the emergency department, I have a patient who needs to come to ICU.”
You: “OK, what’s the story?”
Caller: “Mrs. Smith is a 103 year old lady from a nursing home where she’s bed-bound with an MMSE of 1 and is doubly incontinent.  She has metastatic cancer, end stage COPD and all of her joints are prosthetic.  She’s come in with pneumonia.  She has a respiratory rate of 40, sats of 80% on a non-rebreather, pulse of 140, BP of 70/40 and a lactate of 10. Oh, she’s also got a urea of 30 and a potassium of 7.  She needs to come to ICU for ventilation and dialysis. Thanks.”
You: “Hmmm.  This poor lady sounds like she’s dying. I think you should speak to the family and tell them that.”
Caller: “Oh I’ve already spoken to the family.  I asked them if they want us to do everything and they said yes, they want everything done, so you have to take her.”
Click.

It’s painful because it’s so close to reality.  The goal of intensive care medicine is to save the lives that can be saved, and simultaneously to recognize when these people can’t be saved, and provide them and their families with a good death.   Intensive care is all about reversibility.  And unfortunately the gradual trajectory towards death that our hypothetical centenarian is on is most certainly not reversible.  Intensive care can prevent people from dying of sepsis, trauma, postoperative complications and myriad other reversible problems.  But we can’t prevent people from dying of cancer, dementia, end stage chronic illness and frailty.

As I see it, there are 2 problems with the “the family wants everything done” scenario.  A communication problem and a recognition problem.  The communication problem is that the poor junior doctor who’s ringing the grumpy intensive care doctor in the middle of night is trying to deal as best they can with a situation that they have probably had no training for whatsoever.  They’ve gone into a little room full of emotional family members who probably know that their loved one is dying but, like any normal person, wish it weren’t so.  When the untrained junior doctor has asked the question “Do you want us to do everything?” they’ve said yes. Who wouldn’t?  However to us everything is ventilation, dialysis, inotropes, CPR.  To them everything is fluids, antibiotics, food, water, pain relief, good nursing care.  I see this time and again.  Families are labelled as being angry and unreasonable when requesting that their loved one have “everything done” and then when asked again, by a more experienced doctor, it becomes clear that the family certainly don’t think that CPR or ICU are appropriate.  They just want their grandmother to have pain relief, dignity and a nurse on hand to answer their questions.  The issue is that the opposite of everything is nothing.  And logically if a family answers no to “do you want everything?” then they must want nothing.  And no family in their right mind would want that.

So how should the question be asked?  Well before we get there, we first need to look at the second part of the problem.  Recognition.  We need to be able to recognize the patient who is coming to the end of their natural life and differentiate that patient from someone who is critically ill with a reversible problem and who may benefit from intensive care.  This is difficult.  It takes experience and involves gestalt.  There’s no scoring system or decision rule.  It’s obviously always better to err on the side of caution when you’re unsure, but often it’s fairly obvious.

The point of recognizing the dying patient is that it changes the meeting with the upset family in the little room significantly.  Here’s why.  In this age of increased patient autonomy and decreased medical paternalism, more and more doctors (at all levels) are unfairly pushing the decision making about end of life issues onto a distraught group of surrogate decision makers.  A one size fits all set of questions have arisen.  I think this somewhat defensive approach of deputizing a difficult medical decision onto a surrogate decision maker has arisen from a lack of knowledge and a fear or of potential legal consequences.  So I think it’s appropriate to highlight some of the debate that’s occurring in this field from  ethical and legal scholars.

Barbara Hayes is an ethicist from the University of Melbourne.  She published an amazing paper in the Internal Medicine Journal in January in which she put forward a model to assist clinicians with decision making around providing CPR(1).  To devise the model she interviewed 33 doctors and nurses of varying seniority.  Their views seem to encompass many of the issues that are commonly raised when this thorny topic is discussed;

  • Who’s decision is it to perform CPR? Is it the doctor’s or the patient’s? (or family’s?)
  • Why can’t we just treat CPR like any other treatment – with indications and contra-indications.  We don’t take someone’s appendix out if it isn’t indicated, why do we have to do CPR when it isn’t indicated?
  • What do you do when families have strong religious (or other) beliefs?

Dr. Hayes then uses the themes that arise in these interviews to construct a framework for ethically sound CPR decision making. To do this she splits patients into 4 categories;

  • The obviously dying patient
  • The medically unwell patient who is not imminently dying but who would not survive CPR
  • The patient expected to have a poor outcome from CPR
  • The patient for whom the outcome from CPR is uncertain

She then constructs a simple pathway to guide decision making asking 2 simple questions;

  • Is the patient likely to survive CPR?
  • If so, are they likely to have a good outcome?

It’s outlined in a simple model in the article which is a must reasd. I really like this model.  It’s simple and gives guidance to all practitioners.  Most importantly, it emphasizes that for the first two patient groups, its OK just to tell the family that CPR will not be offered, and then tell them why.  No more silly questions asked incorrectly.

Blinderman et al put forward a similar framework in JAMA last year(2), in which they state that offering CPR to all-comers is an “ethically unjustifiable practice.”  They use a similar categorization of patients, but with only 3 groups;

  • Those in whom CPR is a plausible option
  • Those in whom we should recommend against CPR
  • Those in whom CPR will not be offered.

The authors re-iterate that in the case of the patient who is obviously dying of an irreversible process, there is no option.  Not offering CPR is the ethically correct thing to do.

So if you use these frameworks, the discussion is now much easier to have.  If CPR isn’t going to work, you tell the family that and then tell them about all the amazing palliative care you’re going do.  Tell them how their loved one is going to get pain relief, hydration, possibly antibiotics, expert nursing care and time to spend with family and friends. If you’re pretty sure that CPR won’t work or, even worse, will work but will leave the patient in worse position than where they started from. Tell the family that.  Tell that that if it was you or your loved one you wouldn’t have CPR.  But again, tell them that all other treatment will continue.  If CPR is a plausible option but the situation isn’t entirely clear you need to take a history.  You need to sit down with the family and take a detailed social history about the patient. Not all 85 year olds are created equal You may even find out what the patient’s wishes are, thereby trumping anything the family says.

What’s happening now is that instead of asking, you’re telling.  You’re using your knowledge and experience to guide a group of people through one of the most stressful experiences of their life.  You’re giving them the opportunity to have their voice heard, while reinforcing that CPR is a medical treatment and the decision to do it or not is made by the doctor at the end of the bed.  Most importantly, you’re not offering them the so called “Chinese restaurant menu” of options.

Some may criticize this approach for not adhering to one of the key ethical principles of modern medicine – autonomy.  They will say that the days of the paternalistic doctor are long gone, and that’s a good thing.  But I wonder if there’s still a role for paternalism in medicine.  Doctors and nurses have knowledge and experience that patients and families don’t. I think it’s ethically dubious not to tell families what we believe should be done (or not done.)  A recent article in the NEJM refers to this as “Freedom from the tyranny of choice.”(3) which I think is very apt.  Sometimes we think we’re helping people by giving them options, but we’re not.

OK, so we now know that it’s ethically OK to not offer CPR to obviously dying patients.  What about the law? An interesting pair of  (open access) articles in the MJA last year looked at the legality of surrogate decision making and of doctors unilaterally making a patient not for resuscitation(4)(5).  The articles look at the legal aspects of a coroner’s court decision in the Australian state of Queensland where the coroner criticized emergency department staff for initiating a not for resuscitation order on an 82 year old woman with respiratory failure secondary to pulmonary fibrosis.  While the coroner didn’t disagree with emergency physician’s management of the patient, or indeed making her NFR, his criticism was that he interpreted Queensland guardianship legislation as requiring consent for surrogate decision makers before any treatment (including CPR) is withheld.

The 2 articles take both sides of the coroner’s argument.  One argues that this interpretation of the legislation puts medical staff in a very awkward ethical position.  Getting consent to withhold CPR implies that there is choice, when in this case clearly there was not.   The counter argument (from a professor of Law) makes some interesting points.  His argument is perhaps summed up by one of his opening statements, in which he describes futility as “a subjective notion masquerading as a form of professional, objective and scientific assessment.”  He argues that the views of the surrogate decision makers be taken into account before any treatment is withheld or withdrawn.  I’m not sure I agree with all of his arguments, but he does make a good point that most healthcare professionals are blissfully ignorant of health law in their states and jurisdictions.

I think the central issue here is good communication with patients and their families.  I think that the decision to offer CPR or not is a medical one but that patients and their families must be informed that this decision has been made.  They can be given opportunities to contribute to the discussion, but they must be aware of the fact that the decision is a medical one.  If they strongly disagree with the decision they must have a route of appeal open to them.

Talking about dying and end-of-life decision making should be thought of as a procedure like any other (except that it’s probably the hardest one we do.)  We get fixated on intubation and sticking in central lines.  We all know (roughly) how many tracheostomies we’ve done.  But we don’t have prolonged arguments on Twitter about how best to have an end of life conversation.  We don’t keep a logbook of how many difficult conversations we’ve had.  Looking after a dying patient is meant to be a core skill for every doctor, nurse and paramedic, but most of us get taught the 5 stages of grieving by someone who’s never told a family that their beloved matriarch is going to die and it’s left at that.

So what’s the best way forward?  I’m keen to know what formal training, if any, people have had in this area?  I’m very keen to argue with people who disagree with the ethical or legal arguments I’ve put forward. But most of all I want end of life communication to be done better so I can stop getting that phone call in the middle of the night.

1. Hayes B. Clinical model for ethical cardiopulmonary resuscitation decision-making. Intern Med J. 2013 Jan. 17;43(1):77–83.

2. Blinderman CD, Krakauer EL, Solomon MZ. Time to revise the approach to determining cardiopulmonary resuscitation status. JAMA: The Journal of the American Medical Association. 2012 Mar. 7;307(9):917–918.

3. Lamas D, Rosenbaum L. Freedom from the tyranny of choice–teaching the end-of-life conversation. N Engl J Med. 2012 May 3;366(18):1655–1657.

4. Lawrence S, Willmott L, Milligan E, Winch S, White B, Parker M. Autonomy versus futility? Barriers to good clinical practice in end-of-life care: a Queensland case. Med. J. Aust. 2012 Apr. 2;196(6):404–405.

5. Stewart CL. A defence of the requirement to seek consent to withhold and withdraw futile treatments. Med. J. Aust. 2012 Apr. 2;196(6):406–408.

Disclaimer:

This post represents my perspective on an area of medicine that is still open to some ethical and legal debate.  These words are meant to encourage thought and debate but are not intended to be used to make decisions in the management of patients.  Local laws and policies should be adhered to at all times.

What is Palliative Care?

I’m currently taking some time out of the hustle-bustle of the busy ICU to undertake a bit of an elective period in palliative medicine.  So I’ll be posting a bit on some of the aspects of palliative medicine that I think are relevant to the critical care clinician, be they doctor, nurse or paramedic.

The first thing I want to talk about may seem obvious, but I’m surprised how few people know the true answer… What is Palliative care?

I’m reminded of the episode of “The Big Bang Theory” where an oblivious Sheldon keeps responding to an increasingly exasperated Penny’s request to know what Leonard does for a living with the answer “What is Physics?”  I sometimes feel the same exasperation trying to explain what I do to my colleagues.

I guess the main misconception is that people are confusing palliative care with end of life care.  A Venn diagram come in handy here (When don’t they come in handy?)  End of life care is one aspect of palliative care, but that not all there is.

Screen Shot 2013-04-20 at 3.46.38 PM

So if it isn’t end of life care, then what is palliative care?  What about societies and college’s definitions?  They must be helpful.

“an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

WHO

 “Palliative Medicine is the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life”

Derek Doyle, Oxford Textbook of Palliative Medicine, 1st Ed

“the medical care of patients whose disease is not responsive to curative treatment”

Australasian Chapter of Palliative Medicine

The WHO definition seems a bit wordy.  The definition from AChPM is more concise, but I think that the essence of palliative care is best summed by Sir Raymond Hoffenberg, past president of the RCPE;

“Palliative medicine is no more, no less than the quality of care we should be offering all out patients every day – care tailored to their needs, skilled, compassionate.”

That’s all it is.  Good, meticulous, common-sense bedside medicine. Provided by compassionate, pragmatic doctors who don’t lose sight of the big picture.  Sounds a lot like intensive care doesn’t it.  Palliative care is medicine that doesn’t ignore the elephant in the room.  We acknowledge that the patient has an incurable illness.  We don’t dance around the topic of death.  We provide simple, effective treatments that are aimed at improving quality of life.  Still sounds a lot like intensive care doesn’t it?

The other thing I like about Hoffenberg’s definition, is that it reminds us that while being a specialty in it’s own right, the delivery of simple palliative care is an essential skill for all doctors.  More importantly, the delivery of good end of life care, is an essential skill for all health care professionals.  A palliative care consult should only be required for difficult, complex cases.  Unfortunately the increasing silo-isation of modern medicine means that very few doctors feel comfortable saying the word “death,” never mind providing end of life care.  The result of this of course, is that scores of patients who wanted to die at home end up dying in ICU without anyone ever asking them what they wanted.

Some of my colleagues are genuinely surprised when they see me ordering blood tests, or ordering a CT.  “Aren’t you the palliative care registrar?” They say with a tone of confusion.  As if the only thing I should be ordering is a huge dose of morphine.  But modern palliative care is more than just syringe drivers and laxatives (obviously that’s still a huge part of it though.)  We will do bloods to find things that we can treat to improve quality of life (hypercalcaemia or anaemia for example.)  We will do CTs to find things that we can treat to improve quality of life (big pleural effusions or ascites or bowel obstruction or biliary obstructions.)  One of the things I enjoy the most about palliative care is it allows you to think outside the box.  It allows you to use a drug for it’s side effects rather than it’s intended effect; to do a minimally invasive procedure knowing that the risk-benefit ratio almost always lies in favour of benefit.

Some patients receive palliative care for years and years (prostate cancer, motor-neuron disease) many receive palliative care while still receiving disease modifying treatment (myeloma, and indeed many solid organ tumours in the age of “-mibs” and “-mabs”) and some patients receive palliative care while simultaneously awaiting a cure (cystic fibrosis awaiting lung transplant.)  We look after a heterogeneous group of patients of all ages who don’t all have cancer.  In many ways it’s just good, general, internal medicine that doesn’t get bogged down in pointless minutiae.

The other aspect of palliative, of course, it the social and spiritual aspect.  Until recently I’ve never had to ask a patient if they’re religious (I actually ask “what’s important in your life”) or talk to a patient about their fears.  It’s both incredibly difficult and incredibly rewarding.

So what is palliative care?  It’s medicine.  The way it should be.  Delivered by caring, compassionate doctors and nurses (and paramedics) who understand the big picture, can communicate with patients about spirituality as well as symptoms, and have an understanding of pharmacology and pathophysiology that allows them to prescribe simple effective treatments focused on quality of life.  That’s all.  We don’t ignore the elephant in the room, we embrace it.

Facing Death

While I prepare my next post after a long absence, here’s a documentary from PBS that should be compulsory viewing for any clinician involved in critical care.  It examines the interface between intensive care and palliative care in a very American setting.  However my experience is that the Australian experience is becoming increasingly similar…

Watch Facing Death on PBS. See more from FRONTLINE.