David AndersonIntensivistMedical Donation SpecialistThe Alfred ICU@expensivecare

Tonight Id like to introduce you to Milicent. Milly to her friends. Well, she doesnt really have many friends any more. None in fact. Shes outlived them all. Milly has family though. They dont call her Milly though. They call her mum, or grandma. Milly was quite the looker in her day. She went to a good school. Played lacrosse. She served as a nurse in the war. Well, that was her cover story She was actually a spy. She got a medal from the Queen.

After the war Milly married her sweetheart, Ron. Ron was a couple of years older. He was an artillery officer in the war, and now they ran a clothing store together. Pretty successful one actually, Im sure youd know it. They had 5 kids. Little Ronnie junior died in infancy. That hit them both pretty hard. But Maureen, Alf, Roger and Francene all grew up to do their parents proud. Geography has come between them over years, and there are now grandchildren on 3 continents, but thats normal these days I guess.

About 20 years ago they sold the shop and got ready for retirement. That change of pace came as quite a shock to old Ron. To tell you the truth he couldnt really handle it. He collapsed on the golf course and died after only a couple of years of retirement. They were just about to go on that big cruise. Millys been on her own since then. Well, not really on her own. You see Maureen moved back home to help her. Maureen never married. Milly had had her friends too. At the bingo. Most of them have passed on now. Its just Milly and Maureen now. And some Christmases some of the others too.

About 5 years ago, Maureen was at work when she got a phone call from the police. Milly had been found in the town centre, out the back of a shop going through the garbage. She told the constables that she was looking for something for dinner. Dementia, the doctor called it. He didnt really say much more. Maybe he did, but Maureen didnt take much in. Anyway things pretty much went from bad to worse. About 2 years ago Milly had to move into the nursing home. That was around the same time she stopped recognising Maureen. Now she just stays in her room. She cant really get out of bed. She stopped talking altogether a while back. And started wearing nappies.

Nice story, I can hear you thinking. Bit sad. But how does it affect me. Well, my friend. Youre about to become a player in this story. Millys life and yours are about to intersect.

Maureen gets a phone call from the nursing home early one morning. Were calling about your mother. Her breathings laboured. She has a fever. Dr. Smith will be here later this afternoon, or do you want us to call an ambulance to take her to hospital. Maureen doesnt hesitate - The ambulance! Why are you even asking. The ambulance arrives at the same time as Maureen. Shes never seen anyone breathing so fast. Lights and sirens to the emergency department. Maureen is asked, well - told, to wait in a dingy little room. Theres a box of tissues and a Womans Weekly from 2005 on the table.

The ED registrar carefully assesses Milly - Shes Mrs. Robertson now - And picks up the phone. And your part in this tale commences.

Hi, its Jane from ED. Ive got a 92 year old woman in resus with septic shock from pneumonia. Shes pretty sick. But shes from a nursing home with advanced, probably end-stage dementia. Shes non-communicative and double incontinent. She looks cachactic. Shes febrile at 40 with a pulse of 130 and a BP of 90/60 after a couple of liters of saline, Shes got a resp rate of 45 with sats of 85% on a non-rebreather. She looks like she needs to be intubated. Ive started Tazocin, Vanco and Azithromycin and shes on some peripheral phenylephrine. Her daughter wants everything done.

You take your decision to Maureen, whos still waiting in that little room. You introduce yourself, shake her hand, sit down. Ask her what she already knows (Mums really sick, they think its a chest infection), explain that thats true. You ask to know a little more about Mrs. Robertson - what does she like to be called - Milly, thats a lovely name. Isnt dementia a terrible disease. What was she like before it. She was very active. Went on cruises. She learned to ride a motorbike - wow. She was a spy in the war - You dont say. It sounds like she really valued quality of life. I have to tell you, Im really worried about her. What do you know about dementia, about how it progresses over time? Not really anything. Well dementia, Im sorry to say, is a terminal illness. Like cancer. And when people die of dementia its usually because they stop swallowing properly and some food goes down the wrong way and they get a chest infection. Im really worried that this is whats happening to Milly, to your mum. If Milly were here in the room with us right now, what do you think she would have to say about what Ive just told you. Shes a fighter. Those 3 little words. Shed say that she wants to live. At all costs. Do you think she enjoys her life now? In the nursing home? Im her power of attorney and I want you to do whatever needs to be done to keep my mum alive for as long as possible. OK. I can see that this is really upsetting for you. Thats normal. I really there was something we could do to make Milly better, but Im worried that, while we can treat this pneumonia, there will be another one, then another one. Thats OK - She wants to live. She fought in the war! Shes a fighter! End of conversation.

Milly is intubated and lined up and taken to ICU.

The title of the talk I was asked to give tonight is Never, Ever Die. I wanted to use the time I have to talk with you to share a few things I learned while practicing in another medical culture. On face value it may not seem like its a culture that different to ours. But you only have to scratch the surface a little to see significant differences that are only getting worse.

Im talking, of course, about Canada. Oh Canada. Land of beavers and maple syrup and Mounties and poutine and Blue Jays and, of course, Justin Trudeau. And also, surprisingly to many from down under, a land where, much like its unfriendly neighbour to the south - death is becoming optional, not mandatory. Im going to use 2 recent policy changes in Canada, in Ontario in particular in fact, to highlight whats going on in that snow covered expanse but first we need to delve back into Millys story,

because Milly is helping us examine a looming epidemic that will affect us in ICU perhaps more than any other in the past. This isnt swine flu, it isnt Ebola, it isnt Zika Virus. Its dementia.

250,000 Australians living with dementia now60,000 new cases annually1 Million Australians living with dementia by 2050 with 400,000 new cases annually 10% of Healthcare Spending Second Leading Cause of Death

There are currently somewhere around 250,000 people with dementia in Australia now, with around 60,000 new cases being diagnosed annually and it is estimated that by 2050 there will be over 1 million Australians living with dementia, 400,000 new cases will be diagnosed annually and 10% of healthcare spending will be on dementia. 12,000 Australians died of dementia last year, making it the second leading cause of death after cardiovascular disease.

Mitchell; NEJM: 2009

Dementia is a terminal, progressive neurodegenerative disorder. Median survival after diagnosis ranges from 3-12 years, but by the time someone with dementia has been admitted to a nursing home, the median survival is 18 months. And after an episode of pneumonia or the onset of swallowing problems, median survival is 6 months.

Teno; JAMA Int Med: 2016

This is all very interesting, I can hear you ask, but how does this affect me in the ICU? Patients with advanced dementia dont come to my ICU. Perhaps they dont. Not yet, at least.

A paper came out in JAMA Internal Medicine last week looking retrospectively at ICU admissions for nursing home residents with advanced dementia. It showed a doubling of the rate of mechanical ventilation over the 13 years of the study with no effect on mortality.

Millys one of those patients with advanced dementia whos wound up intubated. Lets check in on her. 2 weeks have gone by. Shes still in ICU. Her sepsis has resolved and her pneumonia has got better, but she cant be weaned from the ventilator. The team looking after her seem pretty clear that this is a bad sign, and arrange a family meeting to discuss her next steps. A bleak picture is painted in the meeting

Are surrogate decision makers allowed to demand treatments that arent felt to be clinically indicated. This is where Canada and Australia have diverged in recent years. And a recent supreme court ruling has cemented this practice into law.

Downar; CMAJ: 2014

In this tragic case, the intensivists put to the surrogate decision maker that the patient had no realistic hope of recovery and that it was appropriate to withdraw life-sustaining treatments. The SDM appealed to the Ontario Superior Court of Justice. The judge in this court found that consent was required for WLST, as, under Ontarios Health Care Consent Act - WLST constituted a treatment. The intensivists appealed to the Ontario Court of Appeal, which found that WLST isnt a treatment and doesnt require consent - but it must, by definition, be accompanied by palliative care, which is a treatment under the Health Care Consent act and therefore does require consent. The intensivists then appealed to the supreme court of Canada. The argument they presented was that consent should not be required for withholding or withdrawal of treatments that are not the usual standard of care , regardless of whether other treatments that may or may not require consent are administered at the same time. In a 5-2 decision, the SCC dismissed the appeal and agreed with the first court, finding that, under the OHCA, WLST constitutes a plan of treatment, and therefore requires consent from SDMs.

I run a warehouse for the dying

U.S. Intensivist

Cape; JME: 2016

survey of intensivists in Canadaasked whether they agreed with SCC ruling (most did not) then asked if it had affected their practice (most said it had not)Then presented with clinical vignettes and asked to comment on decisions they would make regarding WLST before and after rasouli decision - significant change in practice noted after SCC decisionMost self reported that already provided a high level of inappropriate treatment before the SCC decision

Without a mandate to WLST, you perform a tracheostomy and eventually Milly weans from the ventilator and is discharged to a high level nursing facility.

6 months later you get a phone call from the emergency department. Ive got a frail, demented 92 year old with septic shock from pneumonia. Shes skin and bone. She has a trachy and a PEG. Her daughter is demanding ICU admission. You head down to the ED to see Milly. Skeletal is the best word you can come up with to describe her. In addition to her dementia, Milly has acquired a new label - Frail.

Murray; BMJ: 2008

Critical Illness

Knowing that Milly isnt far from death, and doing everything possible to make her death as unburdened by medical intervention as possible, you decide to talk to Maureen about CPR. Youre back in the little room. Millys getting worse. Her bodys beginning to shut down. If she were to get worse, have you thought about what her wishes would be. Where she would want to be at the end. Im worried that shes suffering. I think that if she doesnt respond to the antibiotics this time, that we should focus on making her comfortable and let nature take its course. You cant just let her die! She wants to live. Im worried that if her heart stops, we wont be able to restart it, and trying to restart it will just end up hurting her. Giving her broken ribs You have to try everything!

So is it appropriate for us 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 patients 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 physicians 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 patients 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.

Downar; CMAJ: 2016According to the policy, the only specific treatment that physicians must provide to dying patients is CPR.The college cited strong support for the revised policy from an online public opinion pollWhile 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.

Diem; NEJM: 1996

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 1996 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.

Hayes; Int Med J: 2012

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 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.

Bosslet; Chest: 2015

Willmott; MJA: 2014FutileBurdensomeQuality of LifeWishes relevant but not determinativeInterests of others not relevantCourts defer to doctors

knowing what is ethically appropriate but being unable to act on it because of obstacles inherent in a situationChen; NY Times: 2009

Moral distressknowing what is ethically appropriate but being unable to act on it because of obstacles inherent in a situation

no patient in my hospital is allowed the luxury of death unless it is authorised by the duty intensivist.Gary MastersonPresident Elect of the Intensive Care Societyhttps://blog.ics.ac.uk/2016/09/12/the-future-intensivist/

Advanced Care PlanningCornerstone of dementia care>90% opt for comfort measures onlyPatients with ADs have less tube feeding, less hospitalisations, more palliative care

El-Jawahri; Circulation: 2016

This was a multisite, randomized, controlled trial of a video-assisted intervention and advance care planning checklist versus a verbal description in 246 patients 64 years of age with heart failure and an estimated likelihood of death of >50% within 2 years. Intervention participants received a verbal description for goals of care (life-prolonging care, limited care, and comfort care) and CPR/intubation plus a 6-minute video depicting the 3 levels of care, CPR/intubation, and an advance care planning checklist. Control subjects received only the verbal description. The primary analysis compared the proportion of patients preferring comfort care between study arms immediately after the intervention. Secondary outcomes were CPR/intubation preferences and knowledge (6-item test; range, 06) after intervention.

1. If anything can go wrong, fix it!2. When given a choice, take both.3. Multiple projects lead to multiple successes.4. Start at the top and work your way up.5. Do it by the book but be the author.6. When forced to compromise, ask for more.7. If you cant beat them, join them, and then beat them.8. If its worth doing, its got to be done now!9. If you cant win, change the rules.10. If you cant change the rules, then ignore them.11. Perfection is not optional.12. When faced without a challenge, make one.13. No simply means begin again at one level higher.14. Dont walk when you can run.15. Bureaucracy is a challenge to be conquered with a righteous attitude, a tolerance for stupidity, and a bulldozer when necessary.16. When in doubt, THINK!17. Patience is a virtue, but persistence to the point of success is a blessing.18. The squeaky wheel gets replaced.19. The faster you move, the slower time passes, the longer you live!20. Death is not the enemy but occasionally needs help with timing.21: When on thin ice, dance.22: Its up to us to save the world.

http://lifeinthefastlane.com/laws-for-the-navigation-of-life/

Death is not the enemy but occasionally needs help with timing.Its up to us to save the world!david.anderson@alfred.org.au@expensivecare