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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How we die – Dr. Sherwin Nuland died

Dr. Sherwin Nuland, surgeon, bioethicist and author of the book “How We Die,” died last week. He was 83 years old and died from prostate cancer. He felt it was important to describe in his book how we die, physically and mentally, from cancer, heart disease, Alzheimer’s, and other common illnesses so we could have frank discussions with our doctor to help us deal with those aspects of illness and death that frighten us the most.

His first patient as a med student in a hospital ER died suddenly from a heart attack. He experienced the death of many family members including his mother when he was 11, and was with his father and his brother when they took their last breaths as they died from colon cancer. As a physician, he observed the process toward death of many of his patients in many different ways.

He wrote that death with dignity is a myth and while we would all like to die a good death, it rarely happens that way. Most of the time, patients suffer interminably, often prolonged by aggressive treatments, visits to the ICU, or futile treatments, through pain, humiliation and lack of control. Even under the best of care, the dying process, especially a prolonged dying process, can be agonizing for both the dying person and the family.

As a hospice volunteer for many years, I witnessed a number of deaths and been told about many others by volunteers, nurses and chaplains in support groups. Enough to agree with Dr. Nuland that we don’t always get what we ask for in that regard and when it does happen, it’s just a  coincidence.

More likely, we will be completely helpless or barely coherent and things will go on behind our backs without our knowledge or understanding by people who say they have our best interests at heart. We may want to die at home in our own bed surrounded by family but it’s more likely the last thing we’ll see will look more like a scene from a horror movie in a bright, sterile torture chamber.

Doctors will tell patients and families what they think they want to hear, that there is always something that can be done, that there’s always hope that the next treatment will be the one. Families tell their dying loved ones half truths to protect them, make promises they can’t keep, pretend everything is going well when it isn’t, avoid conversations about how they want to die until it is too late. Everyone follows the philosophy, as Dr. Nuland said he did for so long, that anything is better than death.

911 is called, CPR is administered, ribs are broken, tubes are inserted, bodies are bruised, invasive procedures performed. Maybe patients are put on ventilators and paralyzed so they don’t fight the restraints that bind them to keep their bodies alive. They know everything that is going on but they can’t do anything about it. They are trapped in a private hell while decisions about how to prolong life are debated in the hallways. Their death is terribly, terribly difficult and is the usual outcome of all this activity. Statistically, only a small percentage of these patients make it out of the hospital alive after this frightening experience. An even smaller percentage survive for more than a few months.

What gets taken away from the terminally ill or elderly patient is the opportunity to be at home surrounded by their loved ones during the last few weeks or months as the body shuts down naturally and the person adjusts to letting go. They lose the time to make amends and reconcile their lives, to say their goodbyes and fulfill their bucket lists.

This is what Dr. Nuland came to understand through the deaths of his patients and family members and why he wrote his book to help people make informed decisions about their preferences for end of life care, including when to stop aggressive, invasive treatments and accept pain management for the remainder of one’s life.

During his lifetime, hospice and palliative care have evolved to assume a bigger role in the care of terminally ill patients to keep people out of the ICU and allow them to die a good death at home surrounded by their family. It’s not available everywhere yet. Budget cuts are a problem. And it doesn’t work well for everyone. But it is bringing the business of dying back into the family and changing the practice of medicine at the end of life. Healing doesn’t necessarily mean curing the disease.

Dr. Nuland realized it’s not true that anything is better than death and, for many people, what they would have to go though in order to come out the other side alive is simply not worth the pain and effort for the short reprieve. He came to recognize that death is part of the life cycle and to redefine hope as the belief that something meaningful will happen, that we lived a life that meant something to others and will be renewed through others whose lives we touched.

Although Dr. Nuland wasn’t a proponent of physician-assisted dying, he was a strong advocate for end of life planning, including having The Conversation among family members, appointing a healthcare representative with the authority to speak for you if you become unable to communicate, and filling out an Advanced Healthcare Directive to assure your end of life wishes are carried out.

Being proactive doesn’t mean you are giving up or are by any means ready to die. The Conversation ideally should take place long before anyone is even sick or turns 65 because life can change on a dime and suddenly there is no time. Decisions have to be made immediately, no discussion.

If there has been no conversation and there is no Advance Healthcare Directive, the family is put under greater stress by being forced to make healthcare decisions for you without knowing what you might have wanted. As Dr. Nuland wrote doing everything may not always be the best choice. The question is where do you draw the line for your self? Next– tell someone!

Next month, April 16th, is National Healthcare Decisions Day, download Advanced Healthcare Directive forms by state for everyone in your family.

Get some tools and advice about having The Conversation with your family or with your neighbors, groups, organizations.

Become informed about Death With Dignity laws in your state; download forms from Compassion & Choices

Prepare your self mentally, emotionally and spiritually for your death whenever, however it happens – How to Die Consciously by Diane Goble

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