How do you make end of life healthcare decisions?

Of a certain age…

by Diane Goble, Columnist, The Nugget News, April 16, 2014

My best friend just had her second mastectomy last week. In the last two years, she’s had her gall bladder removed, a lumpectomy, a mastectomy and now this one. She says the good news is that she’s lost 20 pounds and can see her toes again!

She has several messages on her cell phone asking her to call another oncologist for follow- up. She’s procrastinating. “It’s not in my lymph nodes so I’m not going for radiation or chemo,” she says. “I’m done with the medical stuff.” She insists she’s going to eat better, exercise more, take up yoga and meditation, and try to be as healthy as possible until she dies. She’s contemplating an artistic tattoo to obscure her now breastless chest.

That’s the rub. You can go through all the treatments and deal with all the side effects of them– sick as a dog and wanting to die most of the time. You maybe get a few good months and then it comes back with a vengeance and you die anyway. The outcome is the same. The difference is the quality of life in between.

This doesn’t have any thing to do with age. My friend is in her 60s, five years younger than I am. It can happen to us at any time in our lives. We have jobs to get to, children to raise, relationships to deal with, bills to pay, retirement to plan for, and then suddenly we have to make these decisions about what we want and don’t want because we are diagnosed with a serious illness or have a life-threatening accident.

I had a stage IV melanoma a while back. Had the Moh’s surgery, no problems, no lymph node involvement. That follow-up oncologist wanted to do radiation and possibly chemo, but I said no thanks. I’ve been in remission for almost 8 years. That doesn’t mean it won’t still come back. One or two spots I’d probably have them removed but that with a vengeance thing not so much. I’ll start planning for the end of my days.

I don’t have a problem with dying. I did that once. Drowned. It was a fantastic journey home and back again. I expect it to be the same the next time, only without the back again, so I look forward to moving on to what comes next… because I know there’s a next. Of course I’ll miss my family and friends but I know I’ll see them again soon.

My concern is more about what will happen to me while I’m still in a body. I refuse to put up with Alzheimer’s. Any inkling of that and I’m making my going away party plans before I forget how! I’ve filled out my Advance Healthcare Directive and appointed a non-family member as my healthcare representative so my children don’t have to make any decisions. They don’t want to talk about it so I sent them their copies and included a video of me telling them my decisions about what I want and don’t want. I’d opt for a heart attack over a prolonged illness, but if it were an illness, I’d be working on the paperwork process for physician aid-in-dying the moment I got that 6 months to live diagnosis then I’d keep working my Bucket List!

So how does one decide what they want at the end of their life? It has to be based on one’s own beliefs and values, not forced on you by someone else’s biases. Talk to your family, your doctor, your spiritual advisor, search your soul, search the Internet… meditate, pray, talk to God or a tree. Educate yourself about the process. There are some good videos out these days about death and dying– “Consider the Conversation,” “How to Die in Oregon,” “The Day I Died: The mind, the brain, and near-death experiences.” The more you know, the better decisions you can make about your own healthcare at the end of life.

April 16th is National Healthcare Decisions Day… think about it!

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Vote YES for Death with Dignity laws

Please watch this video and vote with your heart for what you know is the right thing to do…

Vote YES for physician-assisted dying when it comes up in your state before another family has to suffer like this family did, still is, will always. For Nattie’s sake, allow all of us the right to make the choice depending on our own circumstances.

 

Reframing Death for the Death with Dignity debate

As I listened to the public testimony at the hearing before the Connecticut legislature last week on HB5326 that would allow doctors to prescribe life-ending drugs to the terminally ill, what stuck me about the people testifying, whether for or against, was an underlying fear of death.

Some who are opposed to physician-assisted dying cover up their fears by proclaiming that human life, no matter what condition one’s body is in nor how ready to let go one is, is worth living and should not be ended prematurely.

Some religious speakers insist their God decides when it is time for us to die and we have no right to play God or that this is an act of suicide which is a sin– conjuring up images of burning in hell for eternity as punishment.

Many of those in favor of a law with similar safeguards and restrictions to Oregon’s Death with Dignity Act, talked about frightening experiences and fearful anxiety associated with the deaths of their loved ones that they felt could have been reduced if there were such a law and their person could have died peacefully at home in their own bed surrounded by family.

That’s all people are asking is to be able to die in peace, on their own terms, not filled with fear, not strapped to machines surrounded by strangers, not in agonizing pain for days or weeks before the body shuts down… and if the circumstances of their deaths are such that a medication would ease their pain and allow them to continue their dying process in peace if that is their expressed desire, then how can we have a law that denies it because some other people who aren’t yet dying are afraid of death, afraid of a slippery slope, afraid of genocide, afraid of impending doom?

Then there’s the fear of being charged with murder if out of compassion for a person’s suffering a loved one helps a person by administering a lethal medication. Families are forced to live with the fear of watching their loved one dying in agony knowing there is nothing they can do to relieve their suffering. The dying person suffers greater fear their loved one will go to jail if they help hasten their death.

Physician’s fall back on an oath written 2,000 years ago when physicians were thought to be gods because of their healing abilities and everyone thought the world was flat. Get over yourselves! They don’t consider that healing the soul and a peaceful death are what we need most of all at the end of our lives, not more false hopes and futile treatments that cause us more pain and suffering with no time to say goodbye to our loved ones.

Yes, palliative care is crucial and will be able to help most people achieve a peaceful death through pain management, but it’s not yet available everywhere, especially in rural areas, and it doesn’t work in all cases so it’s not a panacea. Hospice is not even available everywhere and with budget cuts they are often understaffed and out-of-reach.

The way the law is written almost no one can qualify to begin with. Only if you have a disease, like cancer, either for which there are no more treatments or patient has stopped treatments allowing nature to take its course, can a doctor with any degree of certainty predict a person has 6 months or less to live… which is why many people outlive a 6-month prognosis. Many people get better under hospice care because they are so well cared for and are no longer being subjected to the side-effects fromĀ  treatments meant to keep them alive with no quality of life.

And if you say you want to die, according to psychiatry, you are automatically diagnosed with depression; therefore you don’t qualify for the medication. So we’re spending a lot of time and money debating an issue that affects a relatively small number of people as if we were fighting against a trend toward genocide, all because we are afraid that death is the worst thing that could happen to us.

Most people wait too long to request hospice where they can also receive pain management so public education about palliative care is an important factor in end of life care. People are afraid hospice means the end, but it really means time to spend with your family, reconcile your life, get your paperwork in order, wrap up the details of your life, write out your last wishes, complete your bucket list, reconcile your life and say your goodbyes.

Yes, even to have a “suicide party” as one lawyer testified about with much disdain. It seems hearing what your loved ones have to say about you and saying your goodbyes before drinking a last toast is less acceptable, more fearful, than after the fact in an impeccable funeral parlor with everybody crying instead of laughter and hugs around the bedside at home.

Most people die after being rushed into the ER, resuscitated, and hooked up to machines in an ICU for a number of days, usually scared shitless and completely unconscious of the agony their family is going through because they didn’t let their last wishes be known. The last memory the family is likely to have of their loved one is of them dying in fear and agony with no opportunity to say goodbye.

If I were able to take a test that showed I was likely to develop Alzheimer’s Disease, I would be stocking up on pills and planning my exit strategy. If I were told I had pancreatic cancer, I would start working on my bucket list, planning my farewell party, and requesting my lethal prescription. In any case, I would not turn myself over to medical science hoping for a miracle out of fear of death… because I do not fear death.

I died once and I know there is nothing to fear. It’s like stepping out of an old worn out overcoat into the sunshine on a spring day filled with love, peace and joy on our journey home!

To fear death is nothing other than to think oneself wise when one is not.
For it is to think one knows what one does not know.
No one knows whether death may not even turn out to be the greatest blessings of human beings.
And yet people fear it as if they knew for certain it is the greatest evil.

–Socrates