You know how life happens in cycles? Well, folks my age are in one now where their parents and older family members are ailing/ passing away. It's been a long time since I buried my last parent, but, as an empathetic friend and fatalist with a strong personal interest in end-of-life concerns, I'm compelled to write this two-part piece.
If you are not in the mood to read about my end-of-life thoughts, or just prefer to avoid talk of death and end-of-life in general, click here to skip to the useful part on how we can help the seniors and ailing loved ones in our lives.
As you may have surmised about me, I am a pragmatist, and an opinionated one at that. I firmly believe that the best way to live one's best life is by planning for as many future scenarios (good and especially bad) as possible, which thus minimizes the number of unforeseen situations which might throw you into a tail spin. Sadly, end-of-life is one such occasion that I argue really should be thought about in advance. While we don't often know how or when we will die, we all will (like it or not), and that inevitability can play out in many ways. And the more we can plan for them, the better that is for everyone involved.
As such, I spend a decent amount of time thinking about bodily autonomy and contend that birth and life are not be the only life stages we should have the right to control. I would argue that how and when we end our lives is also extremely important and deserves to be treated with the respect we seem to allocate only to the prior life stages. While this country fights to enshrine the rights of women to have control over their bodies, of people in general to have children through IVF, and of people to be able to live the life that works for them (in terms of how and whom they love, and with what genitalia feels right), I wonder why that same fight is not taken up regarding how and when we choose to die. I mean, really, wouldn't we all want a plan so that we can go on our own terms (whatever those may be)?
People are living longer these days and the costs of doing so continue to rise exponentially, with the primary goal seeming to be extending one's days on earth. It has been reported that up to 25% of medicare costs are attributed to patients' care in their last year of life. Think about how much money could be saved (and allocated elsewhere) if people had the right to choose not to fight for as long and be able to end the pain and often indignities experienced during the very end of life.
Who are we, as a society, to presume that sanctity of life is the only moral or logical priority? Why does society get to decide when someone is "done" living their life? Why does a person's desire to die mean there is something intrinsically psychologically wrong with them? Why is it against the law for someone to end their own life while inflicting no physical harm on others in the process?
In the book Being Mortal, Atul Gawande talks about how we can make people's final days/ years better by respecting priorities and final wishes, and by utilizing palliative care and hospice services. If I (or my parents) had known about hospice, it would have made all the difference to them and us (they each were begging to be done with living and detested the thought of dying in a hospital). Hospice enables an ailing person (with less than 6 months left to live) to leave this world with some dignity and as little pain as possible. It relieves the family and care givers of some of the hardest times and interactions, and, in my opinion, is the most humane solution to the final chapter in someone's life.
When friends and families "don't want" or "aren't ready for" their loved ones (of a certain age or stage of a disease) to die and contend that they should keep fighting, is that not just really selfishness on their part? Obviously, most of us would prefer to have our loved ones around longer, but if their bodies are failing or they're in pain or suffering and they want out, why shouldn't we respect that? We'll be equally sad whenever they go, I think, and I, for one, would like them to be able to go when they were ready simply because that is what THEY wanted. As parents/ teachers/ care givers, we SAY we want what is best for our loved ones, and that we want them to be happy and healthy. So why do we ignore those wishes when biology dictates that life is coming to an end?
I have worn many hats professionally and have done all sorts of sometimes random things. For two semesters, in fact, I was a reader/ grader for a Healthcare Ethics class at a local university. One of the units was on end-of-life ethics. Reading about the myriad court cases and challenges in the United States regarding respecting the wishes of dying citizens was heart-breaking for me. One of the reasons I live in Vermont is because it has a death with dignity law which de-criminalizes doctors' helping extremely ill patients with less than 6 months left to live end their suffering. And let's be clear, the suffering is not just with the patient; it is with everyone who loves and cares for that patient. While Vermont is one of ten states (plus DC) to have such laws, the law here is not as robust as I believe it should be.
Canada's MAID (Medical Assistance In Dying) laws are far more compassionate and really embrace the respect deserved by those wanting to end their lives, in my opinion. Some of the program guidelines on it from the Canada.ca website state that "...You must: have a serious illness, disease or disability; be in an advanced state of decline that cannot be reversed; and experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable. ..." Notice that the unbearable suffering can be physical or psychological and that it can't be relieved under conditions the patient considers acceptable? THAT's what I'm talking about; that's what I consider to be humane and respectful, and that's what I think should be available here.
Look, I know some people who want to live forever and for whom quantity is more important to them than quality of life. And that is fine and readily supported by the US medical industry. But, at my age and among my friends just entering the golden years, the topic of quality of life takes precedence over longevity, especially as we watch our beloved family members die in ways that were/ are exactly what they never wanted -- whether it is/was in pain, in the hospital, simply after years of incapacitation, or from alzheimers.
It's just not right that society doesn't respect the end of life the way it does the beginning and middle. <<End of rant.>>
How To Support The Seniors and Ailing Loved Ones In Your Life
If you are dealing with ailing loved ones or have seniors in your life, or are getting there yourself, I'd like to recommend the following...
Read Being Mortal by Atul Gawande. It was a best-seller and is beautifully written by a surgeon who learns about "what matters in the end." I found it life-changing/ affirming. It is somehow NOT a depressing read and I highly recommend it. Click here to purchase (also available in the Reading section of The Store)
Stock up on products which can help maintain independence, avoid embarrassments or falls. Here are some ideas which, along with others, can be found in the For Seniors section of The Store. (Note: I may get a small commission on any of the products ordered here)
Easy-to-read digital alarm clock
One-touch electric can opener -- good for folks with weak hand strength and/ or arthritis. Click here. ($14.99)
WRIST-cuff blood pressure monitor with large easy-to-read display. Click here to order. ($24.99)
Heated foot massager which helps with arthritis, neuropathy, and general foot soreness. Click here, for $129.99
Caregiver Pager/ Wireless Panic Buttons. This is great for caregivers who may be in the same house but not nearby when needed. You can order a multitude of combinations of sensors/ receivers to have in different rooms or however you want. Click here to order. $21.99 is for 1 receiver and 1 sensor.
Collapsible and adjustable walking cane for $21.74 by clicking here.
Folding reacher-grabber tool -- not just for the seniors in your life, these come in handy for anyone. $8.99 will get you one if you click here.
Be a Todd. There's a dear friend of mine, who I'll call Todd, who is perhaps the most thoughtful person I've ever met. But what gets him onto this list is how he treats those who are ailing and those who are caring for those who are ailing. He will offer and provide transportation to/ from doctor's visits and infusions, and he will take on some of the care-giving for a few hours just to relieve the care giver/ loved one. We should all be Todds, and we should all feel blessed if we have a Todd in our lives.
Get all papers in order. This is essential for anyone ailing but also a reminder to take care of this yourself, now. It is essential that loved ones know about final wishes and that the legal powers of medical and non-medical attorney are in order. It is also a good idea to ensure that loved ones know where to find everything they will need to carry out your final wishes, bequests, and settle the estate or trust. The Nok Box is a product which can help get you going and can be found in The Store, or by clicking here.
Talk about the hard stuff. When someone is approaching the end of life, many folks do not feel comfortable broaching that topic and as a result really don't know what is important to the ailing loved one. Are there any items which may be feasible to accomplish before the end (a play, seeing the beach, one more cheeseburger, whatever)? Even if you think you know what the end-of-life wishes are, double check and make sure that they haven't changed. Assure the loved one that his or her loved ones will be ok after they're gone and everything will be taken care of as they wish.
Learn more about hospice and palliative care (if even for future purposes). Here's just one of many websites which can give you information on hospice. Here's a website which will give you information about palliative care, which is not as well known as I think it should be. It is similar to hospice except that there is no 6-month expectancy aspect -- the goal is simply to provide treatments and therapies to reduce pain and promote comfort. By learning about these two care services, you can determine if there is a good fit for you (in the future) or your ailing loved one now. They both provide, through a team approach relief from pain and suffering for the patient (and therefore for the patient's loved ones and care givers).
OK, that's it for today. Heavy, yes. Thought-provoking? I hope so. Being prepared for end-of-life is critical in ensuring that you go out on your own terms. After all, we cannot all be like my mother and will what we want (or don't want) at the end: she couldn't abide the thought of dying in a hospital and literally willed herself a giant (fatal) heart attack when the EMT in the ambulance unhooked her from the monitors (she had stabilized) and mentioned they were just pulling into the hospital... (You CAN'T make that up!)
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