Tuesday, March 8, 2016

Rights and death

Here it is early March, and you'd think it was early May. It's been like this for a month or so, which leads to these two photos.

Linda is worried about these plants and others that are joining them. They're such optimists. They see warm weather and start to grow. They don't read weather forcasts and realize we could still get snow. It can be a cruel world out there, and gardens sometimes suffer. Calgary is hard on gardens. Chinooks. Hail. Snow any month of the year. Drought. Floods. The little plants just keep trying till they die.

Being self aware, humans think about the dying end of the cycle. Not so much when young, as evidenced by the kids that recently thought it was a good idea to slide down a bobsled track on a toboggan. Two of them died. We think about it more when older, when we have a bit more perspective on it. We don't notice the parade at first, then it's really slow, then the deaths come faster and faster till we're swept up in the great parade, and join all those people where ever it is that we go when we die.

This has been milling around in my head for a while, precipitated by the woman who recently won the right (got permission?) for a doctor assisted death, and had to travel to Vancouver. Let's write it out, shall we? For anyone new to my blog, I say what I think, and say why. You are welcome to respond in the comments, which are moderated. Disagreement is fine, but I insist on comments that are respectful.

I want to talk about the various people involved, listed here in no particular order: medical professionals such as doctors, nurses, and various specialists, and the administrative aspects of healthcare; the terminally ill, or those living with pain or a debilitating illness; those who have medical reason to foresee such a future; children; the families and loved ones of the people already mentioned.

For a start, lets separate out the issue of organ donors or transplants. My thinking is that all of us should automatically be considered, where possible, organ donors at death, unless we sign paperwork saying not to use our organs. All organs, every bit of us that's useful. My reasoning is that we're dead, we don't need it anymore. If something from me can extend someone else's life, or improve the quality of their life, have at it.

Let's also note conflict of interest. No person who stands to gain from a will should be allowed to have a say in that person's end of life. Even amounts of money that most would consider trivial, or articles that would normally be considered trinkets can have an impact all out of proportion. Maybe that means people have to be more careful about making their will.

Until very recently suicide was considered a horrible, unthinkable thing. Even dying was considered almost a last resort. We expected doctors to do everything in their power to preserve and extend our lives. Like so many things, that's gotten out of hand in recent decades. Any sort of life was better than death. Many people still believe this. I certainly don't.

Medical people.
Lay people see medical people as the gatekeepers of life and death. They have a heavy responsibility, no doubt about it. Most of us don't understand the complexities of the medical world. We rely on medical professionals to guide us, but the decisions are ours, or should be. Regardless if they think that getting test x is a good idea, I might not want to do it and it doesn't matter if it's a good reason (higher incidence of false positives than I'm comfortable with), or a stupid one (the voices in my head tell me it's a plot).

Here's where we run into the conflict between medical ethics and personal decisions. Medical professionals are paid to provide a service. It's a service requiring the highest levels of human skill and judgement, but a service to a patient none the less. The patient is the one in charge, with some exceptions we'll get to.

I do not want to see medical professions coerced into doing something they think is wrong, but it's not their life at stake. The life involved is the patient's. If the doctor can't or won't give the patient the care they want, they need to refer that patient to another doctor.

Please note I'm not saying the doctors should put down anyone that takes it into their head that a few days of feeling down are enough to end it all. Not at all. Part of the doctor's responsibility is to help the patient understand what options are available that might alleviate issues. There needs to be a process so that patient and doctor and family know what the fully informed and considered wishes of the patient are.

As for the rest of the health system, it must be structured around the needs of patients. We should be doing everything in our power keep people out of hospitals. We are all going to die. Period, end of story.  There comes a time when medical intervention is fruitless. Let's recognize and make provision for the inevitable. We need to build the appropriate facilities for people to be as comfortable as possible along those last, inevitable steps.

Lets consider people in what is called "of sound mind." This is pretty straightforward. If they are in pain, have a terminal illness and see a messy end, or have written clear instructions with these situations in mind, then they get what they want. Yes, there's a process to make sure the various possibilities have been reviewed, and that the situation is as it appears to be. There is a line between a doctor going through a process, making sure the i's are dotted and the t's crossed, and trying to badger the patient into the decision the doctor feels morally comfortable with. Who can say how much pain another can bear or where the end of the rope is? The doctors need to suck it up, even if they don't like it.

Now let's consider those not of sound mind, for whatever reason. Dementia. Coma. Final stages of various diseases or conditions. Intellectual or developmental disabilities. Injury. For those who have left instructions relevant to the issue at hand, their wishes should be fulfilled. In these cases I think the doctor has a higher order or responsibility to ensure they are carrying out the wishes of the patient. This might be with the support of the family, or over the objections of the family. It behooves people that contemplate such a situation to make their wishes clear in a living will or other such document. It's probably smart to consult doctors when drawing up such a document. Everybody should have such a document, and if you are going into a situation where such a state is contemplated, you should make sure the medical system has a copy. If the family disagree, they need to suck it up.

Now, for those that have not left instructions for whatever reason. Maybe they never could, or left it too late. This gets messy. I heard of a case recently where the medical establishment clearly and unanimously agreed that a person was dead. The family disagreed. Ouch. In this case I'd expect the medical system to be choosing life, and doing what they can for the patient, until it becomes clear that it's hopeless.

The medical system can now rescue people that would have died only a few decades ago. We have more sophisticated tests and better medical technology. We have a better understanding of our bodies and what conditions we can cure or alleviate. This will continue to change, and wherever the line is now, it will move in the future. If several medical specialists in the relevant field are in agreement that someone is dead and unplugging life support is the thing to do, the family needs to suck it up and say goodbye. Their thoughts and feelings do not hold any weight against the preponderance of medical expertise.

There is some messy middle ground in there. Maybe the document isn't clear. Maybe the person has changed their mind, or a family member says they have. Maybe there is a new medical procedure and maybe it has risks and maybe the patient is in no state of mind to fully consider them. Maybe some family are trying to file a court injunction to prevent any permanent medical action. This is murky ground indeed, and it's best to leave government legislation out of it for now. I think it's better left to people specializing in medical ethics to examine such situations carefully, and as best as possible fulfill the patient's wishes.

I might as well bring up the crassest of factors now. Money. People will attempt to prolong or cut short the lives of "loved ones" in order to benefit from a will. Somehow the pain of another person takes second place to personal gain for some people. It's despicable. On the other side, every person in the medical system costs the taxpayers something. It's all very well if the system can do something for that person, and it's likely they can be up and around again. But when they can't be cured, should they really be in a bed where the focus is a cure, and the real cost is that someone else can't be getting that care. There should be beds appropriate to that situation, where the focus is on palliative care.

Another related topic while I'm at it. I appreciate that some people have faith, and that's fine for them. They are welcome to write their living will informed by faith.  But for them to project that faith onto someone else, and say god wants something for them is another form of despicable. If god wants something for someone he can darned well make his wishes clear by doing it.

But what about the commandment "Thou shall not kill." Or the Qur'an "17:33: And do not take any human being's life - that God willed to be sacred - other than in [the pursuit of] justice." There's been a lot of ink spilled on this topic, but my take on it is the various churches have built in enough exceptions that serve their purposes that it's hardly an absolute. Helping someone end their life under certain circumstances is not killing them in the same sense we normally use that word.

This one is a horror show for all involved, no denying it. Legally, children are incapable of forming an opinion until the age of majority, though in some cases teenagers have been allowed to express their wishes. Normally parents speak for children and make decisions on their behalf. What parent can be objective about their child? What parent can say anything but 'do what it takes so my child lives?' Cost means nothing to them.

Doctors and the medical system have a terrible burden here. They have to help the family understand the limits of medical technology and what the realistic outcomes are. Nobody ever wants to give up on a child. Sometimes it's the opposite, the parents refusing a treatment. Those specialists in medical ethics will almost certainly be playing a role here.

Family, and loved ones.
If I haven't made it clear, these people are not what the show is about. Their wishes are so far secondary to the clear wishes of the patient that they need not even really be considered. The medical system needs to have the stones to stand up for the patient.

The government's role in all this should be to enable and uphold patient choices, with sufficient opportunity for oversight to prevent patient wishes from being thwarted. All of this needs to be fact based. The sooner started, the sooner we can start dealing with thorny issues on a factual, experiential basis and revise laws if and when required. We can start training medical professionals in the subtle ethics of end of life issues.

We can start helping people write living wills that are clear and comprehensive so their end of life wishes have at least a chance of happening. Maybe they'll die in a demonstration of driver incompetence on the way to work tomorrow and it's all for nothing, but who knows? More and more of us are living longer and longer, and to be blunt some of us are taking longer and longer to die.

I don't remember the exact quote, but one doctor essentially said during an interview, "I've been helping my patients live my entire career, there is no way I'll help them die." I was very sorry to hear that. We are all going to die, and for all too many of us it will come sooner than expected or under circumstances we wouldn't wish for. Not everybody will take advantage even if the opportunity is there, but people should be permitted to express their wishes about their end of life, and insofar as practically possible, the medical system should help them achieve it.

1 comment:

  1. A thoughtful and well-reasoned treatment of a tough topic. Thanks, Keith.


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