I thought it was only me that spent a lot of his time thinking about not so much about death but the actual time period leading up to it, but apparently not. Last week an End of Life Forum was held here in Greater Sudbury and it is estimated that between 400 and 500 folks were in attendance. One of the forum leaders, Dr. Brian Goldman of Mount Sinai Hospital, noted that this would be a topic that will be discussed a lot over the next few decades due to the 'senior tsunami' we all know is just now cresting the hill.

 

To me the opening remarks, as reported, by a local resident, Lauren Vary, brought one of my greatest concerns into focus. Mrs. Vary described her husband John's final 2 years after his being diagnosed with ALS. She had quit her job so she could spend time with him, they took an 11 week long road trip, they had renovated their home, got counselling, received help from our local Community Care Access Centre, and in his final 2 ½ months they had to rely on Personal Support Workers (PSWs). In an earlier article I had written titled 'Senior Citizens Are The Fastest Growing Segment Of Our Population, Is Ontario Ready?' I had talked about the importance PSWs will play when more and more people will be allowed to die in their own homes. I had even had a discussion with a representative of a 'for profit' agency that provided PSWs for home care. She had told me about their methods and procedures which included a back up to the main care giver and that they would always have the same PSWs attending the patient. I was quite impressed and pleased to hear all this but what Mrs. Vary told the audience, was quite the opposite. During John's final 2 ½ months they had 22 different PSWs and to top it all off, they even had a cancellation ½ hour before a PSW was supposed to start her shift and there was no one else available. This shocking experience was not only irresponsible and callous on the part of the worker but on the agency as well. In closing Mrs. Vary told her audience that everybody needed an 'end of life plan'.

 


Mrs. Vary gave good advice but as far as I can tell the Varys did just that. It was when they had to rely on others where the plan fell apart and this brings to the fore that in the end, no pun intended, you cannot rely on anyone but yourself. Unfortunately that can be a tough one for someone who may, through a variety of circumstances, be without any personal support system available to them. In these situations you can easily find yourself at the mercy of an agency and/or Personal Support Worker who do not have your best interests at heart.

 

So what's the answer, I don't know, a nursing home maybe? I have yet to meet a person who wanted to end their life in one of these 'for profit facilities' where the operators take what you or whomever, pay them and then squeeze it for all it's worth to add to their bottom line. I'm sure their stock holders appreciate it but I had to watch my mother spend her final days in one of these places, so perhaps my view point is coloured somewhat. Residents eating food that borders on the un-eatable, where they no longer have any control over their last days, where the number of baths or showers they can have is dictated and you can forget about privacy. You're told how to dress at meal times and then end up having to wear a bib. I recall feeling very angry when my Mom, as well as the rest of the residents, had to line up like a bunch of little kids to get their medicine before going into eat, it was like a scene from Oliver Twist. You are stripped of any dignity and speaking of which, let's not forget the worst of the worst degradation, having your backside wiped by a total stranger. 

 

Some people will say that their personal end of life plan is to {a} shoot themselves; {b} take poison; {c} take a bunch of pills; or {d} die in a self created traffic accident. As it is unlikely that many, if any, will follow through with 'their plan' I guess that the very fact that it is said, either in jest or seriously, tells me that, like a lot of us, they are at least thinking about the end of their days.

 

It's coming up to the 6th anniversary of my mother's death. She was in her early nineties when she died and like her older sister before her, she would say, 'we live too long'. I suspect that this is not an uncommon thought amongst the elderly who have reached that stage of life where they know they are just marking time until they finally go.  My Mom knew the nursing home was her last stop otherwise why would she even be there? Think about it, you are of waning health, the family has all grown and left the nest to build careers and have a family of their own, and your doctor says you can no longer take care of yourself. In reality, now you are un-able to continue to contribute to society in some meaningful way, you're surplus to requirements. Up until you've been parked in the nursing home you may have been at least able to keep the tourist industry going for a while by taking trips and what not until all you have left in you is your naps and frequent trips to the washroom.

 

On the positive side, I suppose you are still making your contribution by keeping some folks gainfully employed and unless things change soon you may count your lucky stars that you were actually able to find a bed at all.   

 

So we have a rapidly growing senior population that are going to be draining the health system of its resources and that are going to need a place to die. There are some that have said that modern medicine has been so successful to be able to extend the lives of people perhaps too long and in fact experts have reported because of this the world is quickly approaching the unsustainable point. There will be all these people and nothing to feed them with. Will people just have to starve or perhaps a war or two in some of the more overcrowded parts of the world will do the trick? You know sort of like forest fires due to natural causes that cleans things up a bit.

 

Perhaps a partial answer comes from not trying so hard to sustain a live that has reached its natural end. Or maybe not even offering treatment that will not only make a patients last days miserable but may only extend their life a very short time, if at all.

 

How many conversations have you had with folks who wished that people would be treated with the same kindness that we show towards our ill and dying pets but for some un-fathomable reason the government has ruled it illegal for anyone to assist their loved ones onto their final journey. What possible good reason could there be for this interference in the personal lives of their citizens? Former Prime Minister Pierre Elliot Trudeau had said that the government has no business in the bedrooms of its citizens; the government also has no un-invited business in any other aspect of a citizen's life either. No one has the right to dictate how the end of a person's life is reached either by preventing a natural death through selfishness or some misguided religious reason. This is evil.

 

So we can agree that death is inevitable and that while the idea of an end of life plan is ideal we can see that there are numerous reasons that no matter how good the plan is, there are many factors to thwart it. Does that mean you shouldn't do anything? Of course not, I'm going to write down a few things I've learned from my own experience and if anyone reading this has other ideas please let's hear them.

 

First, you have to have a will and a Power of Attorney for your health and for your property. You might also consider a living will. See a lawyer about this; there sure is a lot to pick from in Greater Sudbury.

 

Discuss any funeral arrangements you want with your family, and consider prepaying for your funeral. Your family will appreciate it. It's a stressful enough time for them without them having to make the arrangements. People overpay for funerals at this time due to guilt, pride, or just trying to keep up with the Jones'. 

 

Put labels on your nick knacks if you want particular items to go to certain people.

 

Make people aware of your wishes regarding the donation of organs.

 

Join the Memorial Society.

 

Make sure that your family knows your views on resuscitation.

 

If you do end up in a nursing home make sure they know your wishes regarding your death. You can find yourself being sent to the hospital to die with all the drama associated with it when you would prefer to die in a place that is familiar to you amongst people who you know.

 

I learned that if you are in a nursing home you need an advocate. You need someone who can support you and make sure your wishes don't fall through any cracks. Good luck with that.

 

Dying is a major part of living and there is no way getting around it so regardless of the circumstances and outmoded laws, everyone should be allowed, wherever possible, to leave this life with dignity.