End of Life Decisions

When you see your doctor, or get admitted to hospital, the topic of end of life decisions may be brought up.

I am a country GP with many years of experience including emergency resuscitation, and I want to describe my understanding of what you are being asked.

In a nutshell, you are being asked, “If your condition suddenly deteriorates and you require emergency treatment to try and save your life, do you want us to do everything we can, or should we allow you to die?”

No matter what is wrong with you, you are free to say that you would like full resuscitation measures to be taken should you suffer an arrest.

The severe emergency treatments we are talking about are mainly CPR (chest compression/cardiac massage) DC shock (electric shock to the heart) Emergency Intravenous fluid and medication (e.g. adrenaline) Ventilation (Mouth to mouth or an apparatus/machine to do the same) Intubation (a tube placed in the trachea through which a machine can breathe for you). These serious treatments are usually performed on people who are unconscious, they are done without asking for consent, as there is no ability in this situation to gain consent.

There are lesser treatments which are also sometimes considered in this question, such as intravenous antibiotics, intravenous fluids, and oxygen, which can prolong life.

Background.

Patients in hospital sometimes suffer an “arrest”. This appears as a sudden loss of consciousness due to a health catastrophe. This is often unexpected. If no treatment is given, the patient would most likely die.

If a patient arrests in hospital, when a staff member notices this event they press the emergency buzzer, and all available staff rush to that persons bedside and commence resuscitation procedures. These procedures often involve cardiac massage (two handed compression of the chest wall), administration of drugs (such as adrenaline), cardioversion (using electricity to try to regain a normal heart beat), and sometimes intubation (a tube placed in the trachea to allow a machine or a person with a special hand piece to breath for the patient). If the patient survives the resuscitation treatment, almost always they require intensive care support, with the aim of achieving recovery and independence.

In the community, people also suffer arrest. In this situation, the first person to respond may call an ambulance, and all who are able, attempt the same form of resuscitation, as well as transporting the person to hospital where the resuscitation continues. In most situations, only a doctor is able to decide when to call off a resuscitation.

Resuscitation can be lifesaving. I have personally seen many instances of this. Resuscitation often fails, I have also seen many instances of this. Failure of resuscitation is not usually frowned upon. Failure to initiate timely resuscitation by responsible individuals, is.

I’ve never seen it written in these terms, but in my opinion, western culture has held to some degree, the notion that all persons have a “right” to resuscitation, should the need arise, and, all health professionals have a duty of care to be skilled in, and able to perform resuscitation to any individual, should the need arise.

Hospital staff in particular, are bound by a “duty of care” to perform resuscitations on all patients who arrest while under their care, unless the patient has made clear that they voluntarily forego their “right” to such resuscitation. This decision must be clearly documented.

A simple way to understand an end of life decision, is that this decision is basically to tell hospital staff that, if an arrest occurs, you do not wish for resuscitation measures to be taken.

Why would you do this?

There are a number of reasons and a number of circumstances.

Over the years many people have said to me “I never want to be a vegetable”. Meaning that they would not want to reach a point in their life where they are unable to interact with their loved ones, and require 24 hr care in a nursing home in order to survive.

Some people have the view that if you survive resuscitation, that this is the likely outcome.

My experience is that every resuscitation is unique. Many resuscitations fail, and the patient dies. Of the ones that succeed, some do return to full independence, others recover partially, but certainly enough to interact in a meaningful way, some of these may need nursing home care. Others spend many weeks in intensive care, and then, sadly, still die. Very few remain in “vegetative” states. But very occasionally this does occur.

Personally, I don’t think that the vegetative state should be the main reason to decide against resuscitation.

End of life decisions are more to do with practicality and accepting likely outcomes.

If someone is in the terminal phase of cancer, even if they are relatively well, arrest could be seen as a favourable short cut to the end of life. Successful resuscitation, if attempted, on the other hand, would mean the person still has to face further suffering from their disease. It makes some sense here to forego resuscitation.

But there are many other disabling terminal illnesses apart from cancer.

Organ Failure

There are many diseases which cause a particular part of the body to gradually lose function. We are built with a lot of spare function in most of our organs, but once their function drops to less than 50%, we start to suffer symptoms. Doctors often add the word “failure” after the organ or function which is deteriorating. Heart Failure, Respiratory failure, Kidney Failure, liver failure, bone marrow failure are examples. Other diseases are also in this category eg Dementia, severe Parkinsons disease, COPD, advanced motor neurone disease, there are many.

Basically, once you have irreversible damage to an organ, and a disease that we know will cause ongoing deterioration, we know that at some point, you will likely die from that disease. That death often involves an arrest.

 Yes, on the one hand we find treatments that prolong people’s survival, but unfortunately, sooner or later, these diseases, in the current state of western medicine, will cause a person to die, and to some degree this involves some associated suffering. Again, in these situations, it would seem logical, not to resuscitate a person if they happen to suffer an arrest. Whether or not resuscitation is successful is not the issue, the issue is whether or not resuscitation treatment should be initiated. Only the patient is able to decide this issue, but medical personnel are mostly on the side of not resuscitating if you have severe organ failure. Mainly because we know that even if we successfully resuscitate the person, their outlook remains very poor.

COPD/ Emphysema.

When a person reaches the late stages of emphysema, they often need oxygen at home. They are relying on their breathing muscles to do extra work to try and get weak and damaged lungs to keep doing what they are meant to do (Exchanging oxygen for carbon dioxide).

Respiratory arrest is a special emergency situation.

Respiratory Arrest does not always involve unconsciousness. But resuscitation in respiratory arrest would normally involve a breathing apparatus such as a CPAP or biPap machine (mask on face pushing oxygen in) or intubation and mechanical ventilation (a tube in the throat, after an emergency anaesthetic, and a machine pumping oxygen etc in and out) (Please do not confuse the CPAP machine for sleep apnoea with this situation.)

Once a person is intubated and ventilated (and unconscious), they no longer need to breath for themselves, the equipment certainly keeps them alive. The problem for those with SEVERE emphysema, is that their own breathing muscles will never be able to take over the work of breathing again from the ventilating machine. They are too weak and worn out, and the lungs need too much effort to do their job. The result is that, later, there is the well-known and predictable dilemma of turning off the ventilator and allowing the person to die.

In this situation, it makes much more sense to accept that intubation should not be performed, and if the person dies, accept that that is the inevitable outcome.

End of Life discussions

End of life decisions were not discussed much 10 years ago in my experience. It is a recent change to medical practice.

30 years ago, there was certainly much more of a presumption that if a person suddenly collapsed, no matter what was wrong with them, if emergency services were available you did everything you could to “bring them back”. I have certainly witnessed and been present in my little emergency department as people over 80 were brought in with ambulance personnel actively performing CPR, after an unexpected collapse at home.

I have been the person in charge, continuing the resuscitation, going through the standard procedures, then calling an end to the resuscitation, going out to the waiting area and informing the anxious loved ones of the outcome. Sadly, this would often be the sad news of the death of that individual.

If the individual survives in my little emergency room, then they are almost always in a critical condition needing intensive care in a big hospital somewhere else.

This means that they would need a helicopter with a medical team come to our hospital, to collect and take that person to intensive care elsewhere, where they may or may not recover. Depending on all the things that have gone wrong, some people, no matter what age, do recover, some people, no matter what age, don’t.

Recovery sometimes means that the person is no longer as independent as they used to be, and sometimes, NOT ALWAYS, this may mean nursing home care.

Older People.

This is a grey term. No pun intended. Most “end of life” plans/ discussions, are aimed at older people, a bit like the retirement commercials.

But the reality is that if an 18-year-old arrives unexpectedly in an ambulance requiring full CPR, not many people are going to be asking about end of life plans. (If it was known that the 18-year-old had end stage cancer, then it would be very relevant) so what I am saying is that an end of life plan is recognising the fact that whoever is making that plan is coming closer to dying. That is not always obvious to the person being asked the questions.

Pneumonia or any other infection can become quickly life threatening in someone who has multiple things wrong (some degree of organ failure), on multiple medications. People with long term diabetes are prone to many complications, and are also at greater risk of unexpected arrest.

You may be in hospital getting good treatment, but your condition may still worsen.

It is in those situations that the hospital staff want to know how far to go with treatment.

By having an end of life plan, you are allowing death to occur without CPR, intubation or intensive care. You are basically saying, if I collapse, I don’t want you to perform CPR etc. Let nature take its course. Care for me, be with me, but accept that I am dying and allow me to die. That’s really the decision we are interested in as health professionals.

There are many more details you can determine. Should you have intravenous fluids, should you have oxygen, should you have intravenous antibiotics. These are things we normally do for people suffering various illnesses to keep them going and hopefully allow them to recover from an episode in hospital.

No matter what is wrong with you, you are free to say that you would like full resuscitation measures to be taken should you suffer an arrest.

If you have already made it clear that you don’t want to go that far, then we won’t, but if you do want everything done, then we will try.

Intensive Care

More often than not, someone who survives an emergency resuscitation requires an intensive care bed.

Intensive care beds are precious, limited and expensive. Sometimes Intensive care specialists have to make choices about who receives intensive care.

We would choose and 18-year-old person over an 80-year-old person, without any hesitation. So, if the situation arises where an 80-year-old, with serious chronic disease arrests and requires an intensive care bed, but the likelihood of survival and good outcome is very low, the person in charge of intensive care may tell the person in charge of resuscitation (both usually are doctors) that there is no bed available for that person. Even if the person expressed an end of life plan that included full resuscitation and intensive care.

This is simply the reality of intensive care.

Finally, I wish to point out that CPR is more often than not unsuccessful. This is because, when a person arrests (collapses etc.) often there are major, serious medical reasons why that has happened, and these often cannot be fixed or reversed.

SO even if CPR is performed, the outcome is often death.

In Summary

An end of life plan recognizes that an individual is closer to death than the average person.

An end of life plan allows carers to do LESS than full resuscitation treatment, in the event of an unexpected, or even expected collapse and deterioration.

Sometimes, we as health professionals are wishing the patient to know that their disease is serious, and even though currently they may feel reasonably well, their prognosis is poor, and they are actually reaching the end of their life.

This is most relevant during a hospital admission, when the staff want to know how to treat each patient if they were to arrest.

It is normal practice to do “everything we can” unless a person has stated otherwise.

It is helpful when everybody (staff, patient, loved ones) is “on the same page” regarding end of life plan.

This particularly applies to those with some degree of organ failure, multiple chronic illness, or advanced disease, who are more likely to suffer a complication or an unexpected deterioration in their condition, even when the reason for being in hospital seems fairly simple and non-serious.

Euthanasia

It is important not to confuse any of this discussion with euthanasia. Euthanasia in Australia is against the law. It is a deliberate medical act to end a person’s life. Withholding resuscitation is not a crime.