Advance Health Directives/Living Wills

[Julia]

In Queensland these documents are called Advance Health Directives. I think there is a different name in some of the other States.

For those who don't know, it's a document designed to make clear your wishes should you be unable to communicate in the case of illness or injury.

Most people who complete these do so with the aim of ensuring that - if they are not going to recover - their death will be as comfortable and speedy as possible. Mine, for example, dictates that unless I am able to make a full recovery I do not want any antibiotics, artificial feeding, fluids or oxygen, but rather sufficient pain relief and/or sedation to prevent unnecessary pain or distress.

In the last few days a situation has arisen with a friend who is dying which has made me aware of the importance of not just completing this document, but making sure someone on whom you can depend to advocate for you knows where it is and will insist at the hospital that it be followed.

My friend completed an Advance Health Directive several years ago.
She has an aggressive cancer at the base of the brain and will die within a week or so. She has lost all voluntary function: cannot speak, swallow, cough, move, except for constant involuntary spasms of her entire body which are obviously causing her immense distress. Her husband says he 'doesn't know where the Ad. H. Directive is' and so the nursing staff are continuing to administer fluids, artificial feeding, and oxygen. This is absolutely not what she would want.

So, not an attractive subject. But maybe one which we need to think about.

 

[tech/a]

Julia.

Most here would be way off even contemplating exit stage right---

But rest assured some like myself have seen the light---A bit premature (The light). To me its not length of life but quality.

 

[kenny]

Our prayers go with your friend, Julia.

In NSW, the relevant place to seek more information is at this link to the Dept of Ageing, Disability & Guardianship. It's called an appointment of "Enduring Guardianship"

Everyone should consider setting up one of these and also an Enduring Power of Attorney when they set up their will.

http://www.gt.nsw.gov.au/plan/enduring-guardianship.cfm

regards,

Kenny

 

[subaru69]

Sorry to hear about your friend.

I'm in Qld also. A large part of my work currently in a tertiary hospital (as a Dr) is to assess competence and therefore the capacity to make decisions.

It is NOT enough just to let someone know, it is better to talk with different people at different times so that EVERYONE is clear about what you want. Too many times I have seen an AHD and then all the kids fight about this and that. I know this sounds very paternalistic (this is what a lot of my colleagues have in their AHD's) but one option is to say that at the time of the AHD being used it's what the Dr thinks is best, at least the surviving children then don't hate each other over whatever decision is made.

It is ALWAYS possible to challenge an AHD. Think about it, it's like a 'pre-nup', as soon as there is any kind of contract it's then an open invitation for legal challenge nomatter how watertight it is. Several philosopical arguments support this such as: are you the same person when you are sick cf when you wrote it; are there new technologies since you wrote it etc.

So, as far as I'm concerned:
1. write an AHD
2. talk to your partner, kids, GP, friends and whoever else about it
3. update it regularly

NB- legally you can only write an AHD (and it must be with your GP) if you have capacity.

Capacity means you can:
1. register information
2. remember information
3. understand information
4. rationalise/weigh up information ie the +'s & -'s of doing something and the +'s & -'s of NOT doing something
5. consistently make the same decision ie not change your mind all the time and not tell different things to different people (a common scenario is to tell partner one thing and the kids another)

Hope this has been of some help...

 

[Julia]

Subaru, that's really great advice. Thanks so much for contributing from an informed viewpoint.

One thing which has really concerned me, and which is brought up by your suggestion of "whatever the doctor thinks is best", is that I have heard anecdotally of several instances where the medical staff have ignored the AHD's.

In the general practice I go to, one of the doctors refuses to prescribe contraceptives because of his personal beliefs. So I would imagine that similar biases could apply to any withdrawal of life support measures if the doctor's personal belief did not coincide with this.

Could you comment on this?

If a hospital/doctor was aware of an AHD and chose not to follow it, could the patient or their family sue the hospital?

 

[subaru69]

In the general practice I go to, one of the doctors refuses to prescribe contraceptives because of his personal beliefs. So I would imagine that similar biases could apply to any withdrawal of life support measures if the doctor's personal belief did not coincide with this.

Could you comment on this?

If a hospital/doctor was aware of an AHD and chose not to follow it, could the patient or their family sue the hospital?

I would like to preface this by saying that I'm not a lawyer, nor trained in law specifically and as such this is only my opinion.

A Dr does not have to perform a procedure or provide a medication that they believe does not align with their morals. The link below discusses a range of ethical issues predominately facing the American College of Ob's and Gob's (aka obstetrics and gynaecology) but also faces GP's, Emergency Physicians and other Dr's.

http://www.ama-assn.org/amednews/2008/01/21/prsc0121.htm

These are actually very common issues. The most important thing is that un-biased/scientific information is presented and that the Dr's personal beliefs are not forced upon the patient. Implicit in this is that the ability for referral is possible. You can imagine in a one horse (read 'Dr') town this could be effectively impossible.

An example that I personally know about is in a tourist town (population ~55000) in Qld the only place to get clean 'sharps' (clean needles for IV drug users) was from the Pharmacist. This is great for harm minimisation except the Pharmacist thought it appropriate to tell the person's family that they were procuring them, which of course led to needle sharing (spread of disease) and use of blunt needles (permanently damages veins). So you can see how difficult it is to maintain a moral position (I'm sure the Pharmacist believed they were doing the right thing) and also provide the best standard of care.

This brings me to negligence.

Very simply to be negligent, as a Dr, you have to perform an act or omission that causes a loss to a patient. For example if you give a medication and fail to warn that you could go blind (INFORMED CONSENT is very important but not the topic here) and the patient goes blind then there is a potential negligence case. If however you had warned about the risk (to a COMPETENT patient) or no-one knew that blindness was a potential problem (ie acted within what was acceptable medical standard at the time) or the patient didn't go blind (ie did not suffer a loss) then it is unlikely a negligence case would be successful.

I know this is long-winded but I'm trying to demonstrate that if you continued life support for a patient, potentially against their ADH, then it would be VERY difficult to prove negligence. This is due to both criteria not being fulfilled, ie most likely, the Dr would be providing a normal and acceptable treatment and then how would you prove a loss from being kept alive. If you argued, for example that a leg amputation from gangrene was a loss/suffering that was preventable if the patient was allowed to die then the Dr would argue that the saving of life is a gain that outweighs the loss of a limb (and is also 'normal' practice).

There is also a very fine line between euthanasia and allowing someone to pass away, and euthanasia carries a potential gaol term. According to law there is no difference between an 'act' or an 'omission'; so if you 'act' to give a bit too much morphine or you 'omit' to give an antibiotic for pneumonia it's the same theoretically. In practice this is not the case thankfully and if any lawyers are reading this don't get any ideas because one day you or your family will appreciate that as Dr's we have a loophole and can assist/allow nature to take it's course.

Something that does need to be made clear, in my experience of working at >5 public hospitals and numerous nursing homes is that the right to die a dignified death is highly regarded by staff and that the problem usually arises from family members who don't see the person regularly. A noteable example, for me anyway due to my area of speciality, is if the patient is depressed/psychotic etc and the reasoning behind wanting to die is based on delusional/nihilistic premise. As in this situation there is a need for mental health intervention, essentially it means they lack CAPACITY.

Sorry this is so long and may not have directly answered your question but this is a very difficult area and I am by no means an expert. This is, by and large, the domain of Ethicists; so if there are any out there please contribute.

 

[Julia]

This brings me to negligence.


I know this is long-winded but I'm trying to demonstrate that if you continued life support for a patient, potentially against their ADH, then it would be VERY difficult to prove negligence. This is due to both criteria not being fulfilled, ie most likely, the Dr would be providing a normal and acceptable treatment and then how would you prove a loss from being kept alive. If you argued, for example that a leg amputation from gangrene was a loss/suffering that was preventable if the patient was allowed to die then the Dr would argue that the saving of life is a gain that outweighs the loss of a limb (and is also 'normal' practice).

Subaru69, really appreciate your detailed and thoughtful response.

In your example above referring to a leg amputation from gangrene, surely if the patient had in his/her AHD the very specific instruction that if the life could only be saved by amputating a limb, then this was not to be done, neither were any life sustaining measures to be employed, and the only medication should be adequate pain relief and/or sedation, then the doctor could hardly ignore this?

There is also a very fine line between euthanasia and allowing someone to pass away, and euthanasia carries a potential gaol term. According to law there is no difference between an 'act' or an 'omission'; so if you 'act' to give a bit too much morphine or you 'omit' to give an antibiotic for pneumonia it's the same theoretically. In practice this is not the case thankfully and if any lawyers are reading this don't get any ideas because one day you or your family will appreciate that as Dr's we have a loophole and can assist/allow nature to take it's course.

Reassuring to read this.

 

[subaru69]

In your example above referring to a leg amputation from gangrene, surely if the patient had in his/her AHD the very specific instruction that if the life could only be saved by amputating a limb, then this was not to be done, neither were any life sustaining measures to be employed, and the only medication should be adequate pain relief and/or sedation, then the doctor could hardly ignore this?

Yes you are right, in general, assuming a valid AHD. It is important to note that the contents of an AHD must be legal, eg you can't say 'take me out the back and shoot me' or 'the only pain relief I want is THC'. So in that vein, it is possible to interpret allowing someone to die, when you know their life could be saved, as negligence. Simply - in this situation (without an AHD) as a Dr you would be stuffed if you palliated only. However, even with the AHD how do you define pain-relief only? Giving anti-biotics will decrease pain indirectly by lessening burden of bacteria. Amputating the leg will certainly decrease pain also. You also mention in your example that no 'life sustaining measures to be employed' - does that mean no food or water or oxygen (via mask or nasal prongs)? It would also be an odd thing to put in an AHD, I mean what 30/40/50 year old is going to think about every specific possible situation eg amputation in case of gangrene. What is more likely is that a person ALREADY has the condition (maybe at an early stage) and is trying to pre-empt treatment. In this case you could argue that the person was not of a sound mind when they wrote the AHD due to delirium (common symptom of severe infection) or an acute stress reaction/delusion/depression or a range of Psychiatric diagnoses depending on the presentation. It would also be unlikely that when put in a crisis situation that all the options are thought through (see my orginal post re CAPACITY).

As Wayne Bennett said 'suicide (or in this case death) is a permanent solution to a temporary problem'.

A common example is colostomy bags. Most people when told that they will only survive bowel cancer if they have their rectum sewn over and their remaining large intestine attached to the side of their abdominal wall, then their poo will collect in a bag which may fall or pop off due to gas/liquid/solid accumulation say 'No'. Colostomies aren't nice but they are often life-saving and once people adjust to them they continue their life. Remember, if you aren't happy with life and it's really that bad after colostomy or amputation or whatever there are always other ways to exit (see W Bennett's quote).

The problem for Dr's is that, since you have mentioned sueing, there is ALWAYS one kid standing by the bedside saying they will sue you if you let Grandma die. I would rather be standing in front of the hospital Ethics Committee arguing about a 1-legged patient that's alive than explaining to the Coroner why I didn't perform a routine surgery when a family member was requesting it.

To summarise; if the patient had plenty of time to consider all options, doesn't have a mental illness and all the family are in agreement then the AHD would likely be honoured. The problem is in the detail. If you leave an AHD general then you can argue that the patient hadn't considered that particular set of circumstances. If it is specific then only one thing has to not fit the description for it to be invalid.

MAKE SURE YOUR FAMILY KNOW WHAT YOU WANT. Even if they don't agree, they need to accept it and know it is what you wanted.

And don't worry Dr's (and nurses) are all pretty good with this stuff, we deal with it EVERY day not just a couple of times in our lives. We also have the advantage of not being emotionally involved (but that is not to say we are heartless), the best decisions are not made when you are crying/upset/confronting your own ambivalence to a relationship etc.

I wish your friend the best in this difficult situation.