Patients die in agony because difficult words remain unsaid, says top surgeon

Patients die in agony because difficult words remain unsaid, says top surgeon

Koren Helbig From: The Courier-Mail October 11, 2010 12:00AM 127 comments

OFTEN the words are mundane: questions about drips, tubes in throats or which drugs are about to be administered.

Too often, these last utterances of the terminally ill words that would be better spent on final heartfelt messages to grieving loved ones are heard only by treating doctors and nurses.

It is these words, and the agony-fed pleas to make it all stop, that haunt one of Brisbane's top emergency doctors.

The respected surgeon, who spoke to The Courier-Mail on the condition of anonymity, is pleading for those with incurable diseases to face their mortality and consider their treatment options before arriving in emergency .

``At the moment, there's no legislation to stop somebody from going to hospital, being offered an operation or an antibiotic or a drug or a treatment, and saying 'no thank you','' he said.

``We don't have the right to force anything on them. But the assumption is that if people turn up at hospital they should have the full gamut of whatever's available, whatever Western medicine has to offer.''

It is this assumption, the surgeon says, that prolongs the suffering of those with terminal illnesses such as severe heart disease, metastatic cancer or advanced lung disease.

Often the drugs that could ease their pain risk accelerating their death and cannot be administered unless a person has requested ``comfort only'' treatment.

The request must be made when a patient is ``of sound mind'' before they arrive in the emergency ward on death's door.

``Unfortunately, people just don't have that conversation,'' the doctor said.

While state legislation provides legally binding forms for those with incapacitating or incurable diseases to chart their treatment choices, take-up is poor.

Queensland Health, hoping to stimulate discussion about end-of-life options, replaced all ``not for resuscitation'' orders with a new ``acute resuscitation plan'' in April.

Chief health officer Jeannette Young said clinicians now focused on talking to patients at risk of ``acute deterioration'' and together they create treatment plans.

The move is welcomed by Palliative Care Queensland, the peak advocacy organisation for groups who help people through their final hours.

Chief executive officer John-Paul Kristensen said discussing end-of-life wishes was often taboo in our ``death-denying society'' and most people ignored the issue.

He said broaching the subject early, outside of the trauma and fear of an emergency ward, empowered families to abandon invasive treatment options and enjoy their final hours together.

``When you turn off those acute high-tech treatments, there's a lot more opportunities for families to be together and to enjoy the time albeit a short period of time where they're not in the chemo unit, or the ICU, or having dialysis," he said.

The right to refuse treatment was enshrined in Queensland law a decade ago, while euthanasia remains outlawed Australia-wide.

Yet Associate Professor Ben White, from QUT's health law research program, said the debates were often confused.

``If we're not allowing people to say no to treatment when it's time, people who are otherwise dying are having all sorts of invasive stuff in the last hours of their lives,'' he said. ``It doesn't show respect for patients or family or dignity."

That the issues are separate is underscored by the support comfort-only measures garner from Cherish Life Queensland, a group strongly opposed to voluntary euthanasia.

State president Teresa Martin said refusing treatment was not akin to choosing to die.

But she worried that people who made decisions to halt treatment might change their minds as death loomed. In the emergency doctor's opinion, that is a moot point.

``This is offering somebody comfort measures; pain relief without worrying whether it's going to kill them sooner,'' he said. ``Because when giving the full treatment, some of it is painful and some of it is undignified and some of it is invasive. ``I am haunted by patients saying 'no, don't do this to me' and thinking, 'what if I was them? I hope somebody listens to me'.''

THE SURGEON'S FULL LETTER TO THE COURIER-MAIL:

Have you ever heard anyone’s last words? Not just their last words to you...but their last words ever, to anyone? I have. More times than I want, but it wasn’t me those people wanted to hear their last words. It just comes with my job. I am one of the people who decide what sort of death other people have.

Death is the one thing you can’t complain about later. A good death, a bad death, you get what you’re given and when it’s done there is no avenue for feedback. I am writing this in the hope that some of you will have better deaths.

Especially, this letter is addressed to those of you who are going to die soon, let’s say in the next year. Some of you don’t know you are in this group, so you will stop reading now. This isn’t written for you. When you die it will be unexpected, and tragic, and my team and I will be trying to prevent it with all the knowledge, skills, drugs and equipment at our disposal. You have more life to live. I’m not writing to you.

There are other people reading this who know their time is near. They have an illness which is incurable, despite taking treatment to control the symptoms. It might be cancer, or lung disease, or heart disease, or a lot of other diseases which mean they can’t do what they used to be able to do, wish they still could do, but will never do again. They can’t leave the house; they’re too weak, too short of breath. Or it hurts too much. Most of their friends have died, or moved away and lost touch, or are themselves too sick to get out of the house, the room, the bed. Their children come over as often as they can but...young people have busy lives. They can’t see well enough to read. They don’t enjoy life anymore. They know they are going to die soon and they’re ready to go. This letter is to them.

I am a doctor, and work in an emergency department. I am one of the few people you still meet, because you don’t get out much these days. In fact it’s been a few months since you left the house. Friends and relatives come from time to time but you aren’t well enough to do anything or go anywhere with them. Sometimes you get sick enough to need admission to hospital, and that’s when we meet. I do my best to assess your condition and treat your disease and we both pretend that this can go on forever; that we will keep patching things up and you will get back home to wait for the next time. One of these times it won’t work. You won’t respond to my treatment, and I’ll hear your last words. I don’t mean to, and I don’t know for certain that they are your last words until later. And they are usually mundane, something about what drug I am about to give you or where I am going to insert a drip. This time you don’t get better as planned. You die.

We are all going to die. Modern medicine can delay death, but cannot prevent it. Sometimes we can delay it for decades, and that’s why I get out of bed in the mornings. Sometimes for months, and that lets people get their affairs in order. Sometimes only for days or weeks, and that’s why I’m writing this.

Medicine is an art which dates back to antiquity. More recently it has become a science. Unfortunately, for most of the time since antiquity, doctors have lacked the ability to do anything about the conditions they diagnosed with increasing accuracy. Modern surgery has only developed since anaesthesia was invented in the late nineteenth century. Antibiotics have only been available since the Second World War. It is only very recently in human history that doctors have had the power to effectively treat many diseases. Now that we have that power, it is tempting to use it wherever possible.

But for some of you who have incurable and life threatening disease, who have no quality in your life, treating your disease is just extending your torture. You develop pneumonia, or a urinary tract infection, or cellulitis. You have another heart attack, another stroke. When I meet you in the emergency department your pain, your shortness of breath, the overwhelming panic of being on death’s door is written on your face. You don’t know what you want, except not to feel like this. I am one of a chain of people you meet who work to treat your disease. Ambulance officers, emergency department doctors and nurses, clinicians working on the wards: all work towards your treatment as if you could be cured. Often that means we can’t give you a treatment which would just make you feel better, because it might make you die sooner.

We struggle through, you and I. You’re pretty scared, but I can’t give you anything for that because it might affect your breathing. It’s the same for pain relief, a balance between treatment and harm. You need to have an oxygen mask strapped to your face, have drips in your arms, plastic tubes in your stomach and bladder. Drugs, fluids, more drips, surgery sometimes. Treatment usually works for at least a while and after a few days or weeks in hospital you go home; it’s over until next time. Over and over during your final 12 months or so we will replay this crisis. One of those admissions to hospital will start out like all the others, but will turn out to be your last. That’s when I’ll hear your last words.

It doesn’t have to be this way for you. You can already choose a different death. No legislation needs to be passed. All patients are required to give informed consent to any treatment offered by a health professional. Patients can choose to decline any treatment too. The first and most common choice is to have full treatment of your disease, with whatever indignities and pain that entails. That’s what we offer as the default now. We assume that when you arrive at our emergency department you want to have your condition diagnosed and treated. The needles, the masks, the tubes, the drugs, the machines, whatever it takes. Because you’re so sick, it’s not the time for me to start a conversation about the relative benefits of treatments, your prognosis, and the likelihood of leaving hospital. That’s Option A: full resuscitation and treatment.

There are other options. You will need to choose them in advance though, before you become acutely sick and need to come to the emergency department. Option B can be whatever you want it to be: all treatments except mechanical life support, or surgery. This will depend on your own wishes as much as advice and recommendations from your treating doctors.

The option I want you to know about is Option C: Comfort measures only. Nothing happens that isn’t done for your comfort. All medications which might make you feel better are able to be given. You are kept clean and warm. You can have the chance for your family to gather round, to be pain-free and calm. You can say your last words to someone other than me.

This option has always been available. It is very infrequently requested. That’s because it must be requested before you come to the emergency department, when you are well enough to discuss it. I can’t offer comfort measures only if you haven’t talked about it with your loved ones: your spouse, your sons and daughters, your friends. They need to hear from you that you have thought about your death, and how you want it to be. No-one likes that conversation. Most never have that conversation, and go on pretending their death will never come.

Apart from it being your wish, I can only offer Option C if you do have an incapacitating and incurable disease. And of course you must be ‘of sound mind’. If all of these apply, then I can offer Option C and hopefully a good death. A death at a time of your choosing, with your loved ones gathered around you, as most of us hope it will be.

What do you need to do to make this happen for you? It’s easy. First, we need evidence of your disease. That isn’t too difficult for most of you because you have been in and out of hospital for months. If you’ve been to my hospital for treatment, it will be there in your file.

Secondly, you need to have discussed with your treating doctors your wish not to go through the whole diagnosis and treatment process again, that next time you want Option C: comfort measures only. Talk to them while you are in hospital. They won’t be shocked. There are forms to fill, they know which ones. But most importantly, tell those closest to you. They are the people who will be with you during that last illness, and need to understand that you have decided not to go through it any more. Talk to them today. Show them this letter if it helps.

They are the people who deserve to hear your last words. Not me.

- an anonymous doctor working in the emergency department of a Queensland Health hospital.

HOW TO MAKE A YOUR PLAN
An acute resuscitation plan:

Clinicians create plans for patients at risk of "acute deterioration'' such as cardiac or respiratory arrest.
The plan remains at the front of the patient's medical chart and guides treatment and care options. It is not legally binding.
The plan replaces all previously-used "not for resuscitation'' orders.
An informal plan:

Tell family and friends your end-of-life wishes. This "common law" directive makes them your "statutory health attorney".
You do not need to fill out any forms.
When you become seriously ill, this person becomes your "substitute decision-maker".
A legally-binding formal plan:

You must be aged over 18.
There are two types of plans: an Enduring Power of Attorney or Advance Health Directive.
An Enduring Power of Attorney formally appoints a person to make financial and health decisions on your behalf.
An Advance Health Directive states your directions on how and when you want treatment, and effectively becomes your decision-maker.
You may also appoint a health attorney to give medical treatment directions outside the scope of these documents.
Get all copies certified by a Justice of the Peace, Commissioner for Declarations or lawyer. An Advance Health Directive must also be doctor-certified.
Give copies to family, friends, your GP, hospital and other health care providers.
The legally-binding documents are used when your doctor determines you have lost your decision-making capacity.
You can cancel or change the plan, which must be done in writing.
Forms are available at post offices and news agencies or at www.justice.qld.gov.au.
See www.health.qld.gov.au/advance-care-planning for more information.

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