Right now our chances of dying in peace, with the freedom to choose where, how, with whom and with dignity, grow rarer each day. There aren’t many things you can absolutely count on but dying is one of them and trust me you don’t want to die like Jacob.
Jacob was almost 96 years old. He’d spent the last ten years of his life in a nursing home with severe dementia. His family rarely visited and his basic bodily functions were attended to by a succession of assistant nurses. Nobody really knows how he felt about his last decade.
Having worked as an assistant nurse myself I’ve had frank discussions with my family about my end of life wishes. And here’s the first little secret – most medical professionals who work with very old people and the terminally ill don’t leave the end of their lives to chance. There’s no way they want to go through what their patients do. So my family knows that I don’t want to finish my life alone and demented, soiling my bed and having green, orange and white mush shoveled into my mouth thrice daily by pathetically underpaid staff.
So Jacob’s old heart just kept on ticking along with no sign of abating until one morning a nurse discovered he had a gangrenous foot and sent him to hospital. The emergency registrar who saw him called the nursing home and asked if Jacob had an end of life care plan. He did, and yes, the nursing staff had read it. But which of them was going to make the decision to let him die of septicemia while filling him with pain killers? Who wants to take responsibility for that? So the hospital staff, who didn’t have an end of life care plan for Jacob, had to deal with him. The surgeon’s suggestion was a very simple, quick operation to amputate the leg below the knee.
Jacob spent his life between his bed, a wheelchair and a pottychair so his foot wasn’t all that busy, and the surgery would be the closest thing to a guarantee of no further complications. But Jacob was unfit to sign the release form so his family had to become involved.
The second little secret fresh from the ED is that the less involved a family is with a patient, the more medical intervention they insist on when called by hospital staff for direction. It used to be that aging parents moved in with (or never moved out from) their children so if they suffered towards the end of their life their family suffered with them. There was an intimate understanding of what aging and dying meant and decisions were based firmly within this reality.
But Jacob’s family swooped in and demanded that Jacob be treated with all guns blazing. The foot must be saved! Then they swooped off to their respective lives again and left Jacob in the hospital surrounded by an entirely unfamiliar, almost as pathetically underpaid, staff. But now as well as shoveling mush into his mouth thrice daily they took blood from him every six hours.
Jacob’s old veins were very difficult to locate and fairly soon he ended up looking like a pin cushion. He may not have known who or where he was but he did know that when someone was sticking a needle into him repeatedly it hurt and he screamed bloody murder about it. The staff had to restrain him to make sure his high-dose antibiotic drip stayed in his arm.
Despite all the indignity they did save his foot, and he was released back to his limbo life in the nursing home. But I’m sure you can guess the end of Jacob’s story. He died. Of course he did, he was very old. Just over two weeks after he left the hospital Jacob, and his foot, died. His final three weeks cost tax payers several hundred thousand dollars and Jacob didn’t seem to enjoy any of it. He probably would have preferred a bottle of good single-malt scotch – his favourite drink as a younger man – and a spectacular sunset by the beach.
When they found him dead, strapped into his chair one day between tv-time and afternoon tea, the nursing home staff provided Jacob’s family with the phone number of a local funeral home and Jacob’s body was neatly taken care of by experienced professionals.
Jacob’s story, while the name has been changed, is entirely true and representative of an increasing number of patients. One doctor says that things have changed in the last two decades that he has been working in emergency departments to the point that he now spends up to ninety percent of his time on the wards dealing with end of life patients who have been kept alive far beyond what nature intended.
One of the reasons you are waiting so long to be seen when you go to your local emergency department is because your doctor is tending to burns victims who died from their extensive burns but were resuscitated to live a disfigured life of never-ending agony, cancer patients who have come to terms with their own death but remain on intensive care life-support systems while their family waits for a miracle that cannot come and aged patients who only wish to go home and die with dignity. There is a quiet guilt among many medical staff who feel as though they are torturing these patients, but they don’t really have any choice. And so they earn their money, tattoo DNR (Do Not Rescusitate) onto their chest or write formal end of life plans and continue to spend billions of tax dollars on patients who have no chance of even surviving their stay in hospital.
It is all too easy to turn any debate about death and dying into an emotive plunge towards paranoia because we are all quite terrified of death. And why not be afraid of death? Of losing all that we know and care about. Of disappearing altogether into who knows what-next? And it isn’t only the what-next but the dying itself that is a mystery to most of us.
In fact the process of dying isn’t a complete mystery but most of us have never learned any more than heart stops… brain stops. We don’t have many real-life death survivors to tell us even the first thing about what it is like when our body starts to shut itself down and prepare us for our final journey. And, echoing our approach to the equally mysterious birthing process, we have let our fear of the unknown convince us it is a good idea to shift the responsibility for it all onto medical professionals, nursing home staff and funeral directors.
Only what has really happened is that we’ve popped ourselves into a nice, comfy, dark barrel and tossed ourselves into a fast-flowing river and right now we’re headed for a very large waterfall.
Our population is aging. Our health budgets are blowing out and mostly because of this intensive interventionist end-of-life care. I don’t want to panic anyone here but… well… my advice to you is to nurture your relationships with your children. Now. You’re going to need them. And if you don’t have any children you should maybe find some other young person and do whatever you can to make life better for them in the hopes they’ll return the favour some day.
Or we could have a mature debate, settle on some solutions, implement them and grow up as a society. Children start becoming curious about death sometime around the age of three, and if you explain it as best you can without the hyperbole they are very thoughtful and matter-of-fact about it. They can see it all around them, it clearly is a fact of life and by about age four they are working through an ‘I don’t want mummy/papa/other important person to die’ existential dilemma. But children are adept at balancing life’s great paradoxes so by five or six, depending on their family-culture, they will either have pushed it down into the recesses of their mind with all the other terrifying thoughts they aren’t supposed to talk about or they will have assimilated the information, worked through the ramifications and begun to operate on the assumption that mummy will die. Not if, but when. In many societies death comes right into the living room. When someone dies their open coffin sits right there on the kitchen table while everyone comes to pay their respects. Having a corpse on the table and going to sleep to the wailing of mourners is unsettling, to be sure, but it makes it impossible to sweep death under the rug and so the whole process remains, necessarily, rooted in reality.
So let’s get onto the solutions. And by all means suggest better solutions. But whatever we do, let’s focus on the end of our lives for long enough to fix this broken system. If the goal is a great death then what do we need to do to get there? And if we manage this project well, both as individuals and as a society, we just might find that the Buddhists are right about death. Learning to die well is one of the best ways to learn to live well.
First we need to plan for our own death. Pick a date, if it helps. For some reason I decided as a child that I would die at 121 years old. I now think I’d prefer to go earlier unless I am really rocking along but I do have a clear idea of what I’d like to happen and I have made my wishes known to all my immediate family. GPs are increasingly offering Advance Care Planning to the elderly but you can ask for their help at any time. Go a-googling to see what’s already being done. For a start take a look at this Australian initiative: http://www.respectingpatientchoices.org.au/
Next we need to communicate our wishes. Start a discussion with family and friends. Yes some people will roll their eyes at you just like teenagers groan when we try to bring up drugs or sex but yes, it is important to communicate on these touchy topics and it does get easier with practice. And to those who accuse you of being overly dramatic or morbid ask them this: if you were getting married would you plan for it and tell people about it or would you worry about being considered dramatic and morbid and just ignore it until the day came, and went? There’s no shame in dying, so have the chat and then get on with life!
As with any goal setting exercise, we need to re-visit the goal periodically to see if we are on track. A little meditation on death can go a long way and it would be a waste of a good life to be constantly brooding on death but reminding ourselves that the day is coming, and reassessing our priorities in light of that end point, is a worthwhile exercise. Am I being the best I can be? Am I proud of myself and what I do and how I behave? Or am I putting off stuff that, if I were to die tomorrow, I would deeply regret? This exercise helps us focus on living in the present. We need to nurture ourselves and our relationships with our loved-ones. We need to put off worrying and spend more time playing with the kids. Remembering our ultimate demise motivates us to sweat only the big stuff.
At the systemic level we need to demand some changes. We’ve done everything we can to sever our connection to the consequences of growing older and as a result we’re currently making fairy-land decisions that serve nobody’s best interest.
For one thing we need to shift the vast amount of money we spend on end-of-life care from the intensive, often torturous, medical procedures into community care. Most people, when asked, request to die in their own homes with support. Most people don’t require intensive medical treatment while they are being born into, or dying out of, this earthly life. But we are leaving that majority to fend for themselves while we fund ridiculous levels of unwanted intervention in hospitals.
Community palliative care is fragmented and needs an overhaul to improve patient experience but there are excellent organisations doing excellent work and the people running them know what is required in that area, we just need to listen to them. For an example of community care, and an organisation that has already been making parliamentary submissions on the topic of improving end of life care in the community, have a look at http://www.karuna.org.au/home.htm
We need an end of life procedure in hospitals somewhat along the lines of the British NHS. If a treating doctor answers the question do I expect this patient to be alive in 12 months with a no, a range of end-of-life services opens up to the patient.
And the most important of those services would be contact with an end-of-life specialist. We bring oncologists to see cancer patients, psychiatrists to see mentally ill patients and social workers or counselors to see patients in difficult situations. People nearing the end of their life, and their families, and their treating doctors and nurses, need specialist guidance. The end of life specialist is not a palliative care doctor. It is someone who understands the physical processes of dying and can negotiate with the surgeon, the oncologist, the cardiologist, the anaesthetist and the hospital administration. But this specialist also understands the emotional and social processes. They know how to get from here to there the most peaceful and dignified way possible, navigating the health system, the funeral system, the legal and financial systems and the grieving process. But not just the grieving process because dying isn’t just about grieving. It is not just about letting go. It is also about finding a way through life’s biggest paradox.
This specialist knows a few good solicitors in your area, they know death doulas and groups that sing to the dying and bereavement counselors and ministers of all religions and great community care organisations and who to talk to about burying your beloved on your own property, having a home funeral or handing the whole thing over to a great funeral director.
Are they trained doctors, or a new profession altogether? Are they hospital-based, do they work with primary care providers like GPs or are they a separate entity, a bit like a dentist – we go see them every so often because we know we probably should but when we really need them we are very grateful they are there!
They are the stage-managers of the final performance and each one of us will get our chance to star in that show. What a relief it will be to have someone experienced to welcome us to the theatre, give us a running-sheet and tell us when it’s time to go on.
So here’s what I want you do to. Get started right away on the individual suggestions and see how you can support your local community care organisation. And send this around to everyone you know who is going to die one day. We need a new profession to serve us as we mature, gracefully, as a population.