DNR: Who Decides?

DNR: Who Decides?

Fred is 78. A retired dock-worker and Navy veteran. At 2 o clock one morning he calls his daughter Dianne, a preschool teacher. “I… Can’t….. Breathe…” He gasps down the phone. His daughter tries to conceal her own panic while telling her frail and increasingly bedridden father not to panic. She dials 911 and paramedics are soon at her fathers side. They obtain a history of congestive heart failure and administer oxygen as well as nitroglycerin and furosemide. On arrival at hospital Fred is seen immediately by an experienced emergency medicine resident who places him on a non-invasive ventilation via a tight-fitting and claustrophobic mask. The resident reads his medical record. The notes from his cardiologist paint a grim picture. Fred has an ejection fraction of 15%. The cardiologist estimates a prognosis of no more than a few months and has recommended palliative care.

Fred is admitted to the Intensive Care Unit (ICU) but fails to improve. The non-invasive ventilation is longer working. The intensivist meets with the tearful Dianne and her husband Mike. Yes, she knew that her dad was sick, and she had an inkling that his medications weren’t helping any more. She didn’t like to think about it but she knew that he would die soon. No they hadn’t spoken about it but she thinks he’d want to live for as long as possible and would value a longer life over quality of life. But no, she didn’t think he’d like to to be kept alive permanently on machines. The intensivist suggests a 48 hour trial of more aggressive treatments. Intubation, mechanical ventilation, vasopressors and inotropes in an attempt to eke another one or two percent out of his flailing heart. The intensivist recommends that if Fred’s heart stops, then he allowed to die peacefully and Cardio-Pulmonary Resuscitation (CPR) not be performed. Dianne isn’t so sure about this. Mike is adamant however – everything must be done that has a chance of prolonging Fred’s life. A day later and the situation is dire. Fred is dying – the medication and machines aren’t helping. The intensivist meets again with the family. Overwhelmed and frightened, Dianne drifts in and out “I’m so sorry…. I have some dreadful news….. Despite everything that we’re doing…. Kidneys failing, liver failing…. Your father is dying…. We should let nature take it’s course….. Comfort and dignity.” Mike interrupts to ask a question; “But if his heart stops you’ll give him the shocks and stuff, right doc?” “No” The intensivist is tactful but firm. “Fred is dying. I wish there were some other treatment I could offer that would make him live for longer but there isn’t. At this stage, with his heart and his other organs in the state that they’re in, CPR simply won’t work. The right thing to do is to make sure that Fred is comfortable and that he has you and Dianne at his side when he passes away”

Is it appropriate for physicians to unilaterally decide who should or should not have a do not resuscitate (DNR) order? Is the decision whether or not to perform CPR or not a medical decision (like whether or not to remove a patient’s gallbladder) or is a decision for the patient or their family that physicians must abide by? The issue has recently been brought to the forefront of many Canadian physician’s minds by a policy document released in 2015 by The College of Physicians and Surgeons of Ontario (CPSO). The document, entitled “Planning for and Providing Quality End-of-Life Care” has the laudable goal of improving end-of-life care for Ontarians by giving physicians guidance on best practice and it particularly emphasises the importance of communication with patients and their families.

In the section on potentially life saving and life-sustaining treatment, the policy gives guidance on the provision of advanced treatments to patients nearing the end of their lives. It offers common-sense advice like engaging in frank and open communication with a patient and their family as soon as a terminal diagnosis is made and considering a time limited trial of intensive care to establish the presence of any reversibility in the patient’s illness.  While discussing conflict resolution in the relatively small proportion of situations when patients or their families disagree with the recommendation of a doctor not to provide CPR the policy states: “While the conflict resolution process is underway, if an event requiring CPR occurs, physicians must provide CPR. In so doing, physicians must act in good faith and use their professional judgment to determine how long to continue providing CPR.”  It is 4 words in that statement “Physicians must provide CPR” that has intensivists, palliative care physicians and ethicists in Ontario feeling uneasy.

Before examining the CPSO policy and its potential ramifications elsewhere in more detail, we should first review the history of CPR. Cardio-Pulmonary Resuscitation was first developed in the early 1960s as a means of resuscitating young patients with ventricular tachydysrhythmias. In the words of resuscitation pioneer Peter Safar, it was intended for “hearts to good to die.” These words are as true today as they were 50 years ago. No-one would doubt that, when properly performed as part of a well functioning emergency medical system, CPR can produce impressive results in this subgroup of relatively young patients who have a primary problem with their heart, and whose other organs are functioning normally. Rates of successful resuscitation of 40-60% are the norm with 20-40% of patients surviving to hospital discharge (the usual benchmark for CPR success).

Over the years, however, CPR has crept into the care of almost all patients who are coming to the end of their lives. This is despite very limited evidence of it’s effectiveness. Indeed, an early observational study of CPR, in the Journal of the American Medical Association in 1961 states that CPR should only be performed after a physician has decided that it has a reasonable chance of returning the patient to a functional existence. No-one would doubt that CPR is the appropriate treatment for a 67 year old marketing executive who has a cardiac arrest on the golf course due to a Myocardial infarct. But what about the 92 year old woman who lives in a nursing home because her dementia is so bad that she can’t feed or toilet herself, let alone recognise her family? What about the 53 year old teacher who used to climb mountains but is now bed-bound and emaciated with aggressive, metastatic pancreatic cancer and who has just slipped into a coma with his oncologist telling his family that he likely only has days to live, if not hours? Ask any doctor or nurse working in an ICU and they will recount story after story of being asked to perform CPR on these patients and many others like them. Continue asking and some will tell you about nightmares, flashbacks, feelings of having failed their patient. Some will use the words torture and assault to describe CPR in these situations.

Some ethicists think that decision making around DNR orders is best thought of by dividing patients into 3 categories. In the first group are those in whom CPR is always an option. The patient who has some kind of abnormality with their heart, but no significant disease in other organs, and who has a sudden, reversible collapse, Many, if not most, patients in this group will walk out of the hospital and enjoy a quality of life the same as, or similar to that which they enjoyed before having a cardiac arrest. The second group is the largest. These are patients whose heart has stopped as a consequence of a chronic, progressive and ultimately terminal illness. These are people with metastatic cancer, chronic obstructive pulmonary disease (COPD), congestive heart failure and dementia. These are patients in whom most physicians would recommend against CPR but would likely perform it if a patient or their family insisted. The recommendation against CPR comes from evidence showing dismal outcomes, with only a couple of percent of patients leaving hospital – many of those to long term care facility and around half of the survivors dying within a year.

The final group of patients is relatively small but lie at the crux of the controversies that sometimes arise around unilateral DNR orders by physicians. These are patients who are clearly dying and in whom CPR will likely achieve nothing except changing the manner in which the patient dies. These are patients like Fred with chronic illnesses like those above that are so advanced that they are bed-bound and comatose; but also patients in ICU who are critically Ill with infections or injuries that are unable to be controlled with even the best medical care available. These patients are typically on such high levels of support that deterioration portends imminent death. In these patients a frank and tactful discussion between the physician and the family is required. The physician must point out the gravity of the situation, the imminence of death and the fact that CPR will not change this. In the small number of cases where families disagree with this assessment, a second opinion should be offered, and perhaps an ethics committee convened. But if a patient suffers from a cardiac arrest while this process is underway, no physician should be compelled to provide a treatment that will not help their patient.

The public at large already have very unrealistic views about the abilities and limitations of modern medicine. Most get their knowledge of critical illness from TV dramas where death is uncommon. An article in the New England Journal of Medicine in 1997 compared survival from CPR in popular medical dramas at the time with actual survival data obtained from data registries. Survival on TV shows was 67% compared with 30% for registry data. In addition all bar one of the 40 patients who survived their cardiac arrest on TV had perfect neurological function with no disability, whereas a high proportion of real world cardiac arrest survivors end up with some kind of disability.

Because of the large number of deaths and devastating injuries seen in the ICU, intensivists have a deep understanding of the principles of biomedical ethics and fully understand the current desire to increase patient autonomy. But there are 4 pillars of medical ethics. In addition to autonomy there is beneficence, non-maleficence and distributive justice. Encouraging physicians to perform CPR that isn’t indicated may preserve patient autonomy, but it isn’t beneficial, it will cause harm and it potentially affects other patients by filling ICUs with patients who have no hope of survival. Some might argue that not offering CPR as an option harks back to medical paternalism of days gone by. I disagree, I feel that offering a treatment that won’t work to a frightened and overwhelmed family offers nothing but false hope and thus not suggesting CPR in futile situations is entirely in keeping with the modern patient centred practice of medicine.

The medical profession as a whole has to accept some of the blame for the current state of affairs too. The oncologists, pulmonologists and cardiologists looking after patients with chronic, incurable illnesses are often reluctant to discuss end of life issues with their patients, worried that they will lose hope – despite evidence to the contrary showing that early frank and honest conversations and involvement of palliative care teams leads to less symptoms, greater quality of life and may even prolong life. Too often the first time that a patient or his family is told that their condition is terminal is by an intensivist during a deterioration. They rightly ask “who I this stranger and why is he telling me something different to the physician I have known for years?” Disagreements over end of life care become almost inevitable.

The first line of the Hippocratic Oath, sworn by physicians as they graduate from medical school, is “Primum non nocere.” First do no harm. Cardio-Pulmonary Resuscitation is harmful. Anyone who argues otherwise hasn’t seen it being performed. Ribs are broken, muscles spasm violently as thousands of volts of electricity pass through them, a thick breathing tube is forced into the windpipe without anaesthetic, power drills burr into bones to gain access to the bone marrow for administration of fluids and medications. As a society we have allowed this barbaric treatment to continue for half a century because of its potential to save those hearts too good to die. Like all treatments in medicine, harms are balanced against benefits and if the harms outweigh the benefits, the treatment is not offered. Requiring CPR to be performed, against the better judgement of doctors and nurses who do it every day, makes no sense. Requiring physicians to perform CPR in futile situations will not save a single life. Instead it will discourage physicians from having conversations that are already hard to have and will remove loving family and friends from the bedside of a dying patient, replacing them with a hastily assembled team of strangers who will perform a treatment that has become nothing more than a futile ritual. If those 4 words “Physicians must perform CPR” from the CPSO policy spread into policy documents of medical regulators elsewhere in the world, end of life care for dying patients will suffer and dedicated physicians and nurses with years of experience will leave the ICU in their droves and seek a calling elsewhere, rather than perform a futile intervention on their most vulnerable patients.

Empathy

Empathy

I saw this video a while back and have been thinking about it again recently. Every day we wander the corridors of the hospital and as we go on our way our eyes meet with those of patients and visitors. And every now then you can tell from their eyes that they’re possibly having the worst day of their life so far. All that we can do of course is smile and move on. Perhaps even pretend we haven’t seen them. This video (despite being blatant advertising for the Cleveland Clinic) give a hint as to what’s going on behind those eyes that we see every day.

I thought it was quite moving. Apparently it’s shown to all staff when they start at the hospital, doctors included to encourage to think about empathy.

I can’t remember what social media source led me to the video, so sincere apologies to whoever directed me to it and now isn’t being referenced!

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.

ALF

ALF

Here are the slides and references for the talk I’m giving on Acute Liver Failure (ALF) at the Bedside Critical Care meeting in Cairns, QLD on Thursday 26th September 2013.

Lee WM, Stravitz RT, Larson AM. Introduction to the revised American Association for the Study of Liver Diseases position paper on acute liver failure 2011. Hepatology. 2012 Feb. 23;55(3):965–967.
The most up-to-date guidelines from the American Association for the Study of Liver Disease. Freely available here.

Patton H, Misel M, Gish RG. Acute liver failure in adults: an evidence-based management protocol for clinicians. Gastroenterol Hepatol (N Y). 2012 Mar.;8(3):161–212.
Another recent and easy to read review of ICU management of ALF. Also freely available here.

Bernal W, Auzinger G, Dhawan A, Wendon J. Acute liver failure. The Lancet. 2010 Jul. 17;376(9736):190–201.
Slightly older but still pretty good review from the Lancet.

Drolz A, Jäger B, Wewalka M, Saxa R, Horvatits T, Roedl K, et al. Clinical impact of arterial ammonia levels in ICU patients with different liver diseases. Intensive Care Med. 2013 May 1;39(7):1227–1237.

Holena DN, Tolstoy NS, Mills AM, Fox AD, Levine JM. Therapeutic Hypothermia for Treatment of Intractable Intracranial Hypertension After Liver Transplantation. American Journal of Critical Care. 2011 Dec. 31;21(1):72–75.

Cholongitas E, Theocharidou E, Vasianopoulou P, Betrosian A, Shaw S, Patch D, et al. Comparison of the sequential organ failure assessment score with the King’s College Hospital criteria and the model for end-stage liver disease score for the prognosis of acetaminophen-induced acute liver failure. Liver Transpl. 2012 Mar. 29;18(4):405–412.

Harbrecht BG. Predicting outcome in patients with acute liver failure. Critical Care Medicine. 2012 May;40(5):1666–1667.

Faybik P, Krenn C-G. Extracorporeal liver support. Current Opinion in Critical Care. 2013 Apr.;19(2):149–153.

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.