Conversations about end of life issues with Diane Goble

THE HITCHHIKER’S GUIDE TO

COSMIC CONSCIOUSNESS

Chapter Four

Death & Dying

Conversations About End-of-Life Issues

The following are a series of emails  from an on-going conversation I had with a pediatric ICU nurse over several months in 1999.

Dear Diane,

Thanks for writing back. It’s nice to have someone to chat with that’s on the same wavelength. Ditto about the lessons. We are all searching and if we keep an open mind the truth of the universe will be revealed to us. I have been reading Conversations With God and I find it refreshing. I am amazed at the similarity of thought that I read in the book and my own views. More amazing still is that the things presented by the God entity are word for word things that I have said and opinions that I share with friends and family. Not that I think I am so enlightened only that I feel it represents a much broader belief system. It is like the universal unconscious or conscious or whatever it was that Jung wrote about. I just think these things are widely held belief systems. Conflict occurs when humans stray from this universal belief and that is where the darkness comes in. We all know on some level the truth and we are like the salmon swimming upstream to arrive back at the beginnings.

So about my patients. I love my little “hemers” as we affectionately call them. That means hematology-oncology patients. Talk about huge lessons in a hurry. I think if you subscribe to the thought that we choose our paths, then these souls are truly great and distinguished. There is so much suffering that they must endure physically. Then there are the lessons again. Sometimes the mechanics and dynamics of the family pretty much tell the story. I had a darling little girl that I took care of named Mary. Her mom was extremely involved and knowledgeable about the physical aspects of the little girl’s tumor and in the techniques involved in her care. The mom spoke like a dr. to the dr.s, a nurse to the nurses, and not at all did she speak to the child. It broke my heart that there was not much of a relationship with the precious little girl yet there was an incredible bond with the child’s illness. The child’s tumor was not about to go into remission and remission was the only hope they had of getting the child to a place where they could do a marrow transplant. All the time I heard the mom say we can’t stop trying to get a remission because then the tumor will take over and she won’t get a transplant. All the talk revolved around the disease state and what the next round of chemo would be. I said to the mom what chance do they give for recovery with the transplant. It was less than 50 percent. I told her that transplants were incredibly difficult for patients to endure and a less than 50 percent chance wasn’t the best odds. She said there wasn’t any other choice. I got the distinct feeling that the woman was not so afraid of losing her daughter as she was of losing this illness. It gave this woman a way to interact with people in the only safe way she knew how. It was a technical cold relationship that she forged but anything closer would have been threatening to her. I saw in the midst of all this a woman who was most likely the product of a sterile unloving home. (She was germaphobic, too.)

Well I guess I have made a short story long once again, as I seem to do . At any rate there was a huge sacrifice on the part of this child. This mom had to lose a child to get into the place of learning how to build relationships. I wonder if the woman ever got a clue. The child had an explosive tumor growth and died quickly without getting a transplant. No dr. ever said to this family that the transplant was a long shot. No one dared to suggest that perhaps the most humane thing to do would be to take the child home. How ridiculous it would be to suggest that they simply hold and love their precious baby and tell her of a place where suffering is absent. That there is a place that is warm and loving as anything she had ever known. To tell her that it was a pleasure and a joy to share the time they had with her courageous spirit and all that they had learned from her brave fight. It gets easier and easier for me to express myself to these families and to these children. I know of my God’s plan for this world and that we mortals haven’t control over how it comes down. Come down it will, come hell or high water and we’ve certainly seen a lot of both of those things recently!!! Thanks so much for being there to share with me. I love you for that!!! Let me hear from you again soon.

Love, Penelope

Dear Penelope,

Interesting story about Mary and her mother, how people handle these difficult situations. She resorted to intellectualism and forgot to love. I think doctors hold out hope as a carrot to people even when there is no hope and wonder when someone will have the good sense to stand up and say it’s time to prepare for death. Human beings fight so much against death that they’ll believe anything.

I get letters from people who opted for the life saving surgery and their loved one died anyway, now they feel guilty. And others who decided against the surgery and the person died and now they feel guilty. It’s too bad death has such a bad reputation! I remember back when organ donation was becoming a big issue but everyone was afraid to ask, maybe someday we’ll have the courage to say it’s time to go home, how can we help you prepare? The right to die is the next big issue!

Peace & Joy! Diane

Dear Diane,

I have no special affection for physical death that is for sure, but I don’t fear it either and interestingly enough I find that the more one practices being close to spirit in trying times the easier it gets. I had another tragic and unexpected death of a child in our ER on Sunday and I took the opportunity to pray with the child’s grieving parents…

To read more of this fascinating conversation…

THE HITCHHIKER’S GUIDE TO COSMIC CONSCIOUSNESS

Kindle version $3.99

• • •

Physician-assisted suicide addressed in new book by Near-Death Experiencer

Beyond the Veil

Our Journey Home

by Diane Goble

We’re all going to die some day so–

• shouldn’t we all be looking into this event instead of living in denial and pretending it only happens to other people?

• shouldn’t we at least have some tools available to us so when it does, however it does, we’re prepared and know what to do next?

• shouldn’t we prepare ourselves to take care of and comfort a loved one who is terribly ill or elderly and facing their own death?

That’s what I thought when I first began writing this book, which is what I was asked to do when I decided to come back into my body during my near-death experience while drowning during a white water river rafting accident in 1971.

Voilà!

 The answers to all those questions you have about death, dying and what comes next are between these covers.

The paperback, published by Cosmic Creativity, is now available on amazon.com and at most major book retailers.

Posting reviews or sharing your thoughts about Beyond the Veil on retailer websites, like amazon.com, may contribute to the evolution of human consciousness and are much appreciated by all those who contributed to the publication of this valuable book.

---

… a way for individuals to consciously prepare for what’s to come, and to better understand the life in their death, and what happens next. Anyone can benefit from this book, so keep it handy. You may use it more often than you think.

~ P.M.H. Atwater, L.H.D., researcher and author of Near-Death Experiences: The Rest of the Story and We Live Forever: The Real Truth About Death

There is no easy way to bring up the conversation of death but Goble’s book shows us why this is one of the most important discussions that we can have.

~ Josie Varga, author of Visits from Heaven and Visits to Heaven

Ultimately learning how to be fully present and conscious for the one who is passing is one of the greatest gifts you can offer someone you love.

~ JoAnn Chambers, Vibrational Sound Healer and co-author of The Sonic Keys: Sound, Light & Frequency; DNA Activation, and The Secret of Abundance

---

This is a conversation you must have with yourself…

and probably should have with all family members–

not that you need to have all the answers right now, but just to get you started thinking about these important questions before it’s necessary to know the answers so there won’t be any family disagreements in the heat of a crisis. We all need to have these conversations about the end of our lives and what we do want and don’t want as far as treatment options, including invasive procedures, aggressive therapies, prescription drugs, palliative care, hospice,  and when and where we choose to die, depending on the circumstances and based on our own values, traditions and beliefs. Ideally we need to review our choices every 5 years as we get older, if we have health changes, lifestyle changes, because we often make different decisions as our age and circumstances change. We need to think about situations like–

If your heart stopped right now, what is your family’s plan?

Does anyone know where your important papers, passwords, contacts, valuables are kept and what you want done with them and who to contact after you’re gone?

If your persistent headaches led to a diagnosis of an inoperable brain tumor and a diagnosis of 6 months or less to live, would you consider the Death with Dignity option (do you know if it’s available in your state/country, what the requirements are)?

Are you aware that your Emergency Contact is not necessarily your Healthcare Representative unless that person is also designated in your Advance Healthcare Directive/Living Will?

If your spouse had a sudden illness requiring hospitalization, what things would you have to do that you wouldn’t ordinarily do? What if the person had been in an accident and was in a coma?

Do you really know what it means if you say do everything to save me?

Knowing that at some point you will die, how do you hope your death will be? Have you told anyone? Have you contemplated your own death?

Have you considered how you would manage becoming a full-time caregiver for a severely ill child or an elderly parent?

If you are entering your dying process, have you reconciled your life and found peace of mind or do you fear what lies ahead?

---

Beyond the Veil: Our Journey Home

was written by Diane Goble, a near-death experiencer who became a spiritual teacher, based on what she learned during her journey home and was asked to bring back to share with as many people as she could.

Her primary message is– We Don’t Die!

Her book is a resource manual, chock full of information about the options that are available to us as we are preparing ourselves for transition or being a caregiver for someone who is in the dying process.

It is a training manual based on the author’s professional course to teach caregivers to be Transition Guides for their dying loved ones or patients.

It is a personal workbook with plenty of Notes pages for those soon departing as they are guided through the practice of the Art of Conscious Dying and writing their own Personal Transition Guidebook.

It is printed in large type.

---

For those of you who need more, go to BeyondtheVeil.net. Diane will be offering classes and webinars with special guests, and private consultations about end-of-life issues and conversations in the near future. If you would like to receive updates, fill out the following form:

Name(required)

Email(required)

Website

Comment(required)

Submit

Δ

Death with Dignity laws

 

The recent death of a 29-year old woman who chose to use the Death with Dignity law in Oregon has invigorated the debate about our right to make choices about our healthcare at the end of our life. Brittany Maynard had a brain tumor that doctors said would end her life in a most undignified manner and she chose not to experience that part of her illness. She completed her Bucket List and enjoyed the last quality time she could with her husband and parents, and died peacefully at the time of her choosing at home in her own bed surrounded by those who loved her.

If you are facing such a decision, whether you are thinking about the Death with Dignity option or not, this book by a Near-Death Experiencer, will help you find acceptance and peace of mind as you navigate medical decisions, care options including palliative and hospice services, conversations with family and providers, filling out Advance Healthcare Directives and making decisions about how your want to die.

Beyond the Veil is for caregivers who will be transition guides for their loved ones, for families to help them have the necessary conversations, and for the dying person who wants desperately to know what is happening to them along their journey home.

Excerpt from Beyond the Veil: our journey home by Diane Goble about Death with Dignity laws:

Reasonable laws can prevent abuse while honoring self-respect, human dignity and compassion. Just as an obstetrician might administer a drug to hasten a birth, a doctor may prescribe a drug that will hasten not death but the rebirth of our spiritual nature. Prepared ahead of time and guided by a transition guide’s voice reading one’s Personal Transition Guidebook, it is a peaceful journey home beyond the veil.

Some people believe it is a slippery slope to allow this at all. They are afraid mentally or physically disabled or senile elderly people will be murdered for convenience. Perhaps in some societies where human life isn’t valued that could be true. It is up to those who believe in death with dignity to make sure laws are in place to prevent forced euthanasia by designating medical professionals and safe procedures to provide humane, compassionate assistance to those who decide of their own free will to exercise this option.

A May 2005 Galllup Poll indicated that 75% of Americans support “euthanasia” for certain patients but only 58% support “doctor-assisted suicide” for the same patients. Use of the term “suicide” was the only difference in the question asked. The Gallup Poll conclusion was that the use of the word caused the apparent conflict in values.

Opponents count on the negative emotional impact of the term. Calling it “suicide” or “murder” conjures up images that clash with religious beliefs and humanitarian values, but have nothing to do with personal choice at the end of life.

This is what Dr. Jack Kervorkian fought for–a patient’s right to choose and the physician’s role at end of life. It’s nobody’s business except the person who is dying, his physician and his family members (and sometimes not the latter). It’s continuing care through the end of life.

Instead of physicians abandoning their patients at the end of their invasive medical treatment options, they could stay with them to provide the medication that will quickly end their suffering if that is their patient’s final request.

Their Hippocratic oath says, firstly, do no harm, but if forcing a person to stay alive while their body  progressively deteriorates for years, whether physically or mentally, isn’t doing harm, I don’t know what is. Seems to me physicians need a better understanding of compassion. Continuing to swear an oath to Greek gods is out of touch with contemporary reality–the earth is not flat and doctors are not gods.

A Peaceful Death with Dignity

I’d like to express my appreciation to Brittany Maynard for going public with her decision to exercise her Death with Dignity option in Oregon because it will bring this conversation to the family dinner table where it belongs. Of course I’m sad she has this terrible condition, but if she can make something positive out of a bad situation, which she is by raising awareness, it gives hope to many people who want the same thing– if my death is inevitable, let it be peaceful and on my own terms.

This is what I encourage people to do on a daily basis through my writings and “Having The Conversation over Coffee and Cake” gatherings. I don’t encourage Death with Dignity, but I’m not afraid to address it as an option and provide resources, such as Compassion & Choices, if people want to consider it. This is a truly personal decision that should be between a terminally ill patient and those in his or her inner circle and it’s a shame the Maynard family has to be exposed to the vitriol that permeates Internet over their personal decision to allow Brittany to have a peaceful death with dignity. It’s as if  everybody suddenly noticed there’s an elephant in the room.

Those among us who think we have a right to an opinion about how any person decides he or she wants his/her death to be should be thinking about how they want the end of their lives to be, not someone they don’t even know. If, for whatever reason you think, having control over one’s own death at the end of life, is wrong then do it your way, whatever that is – and let me do it my way. Don’t force your views on me because you think you have all the right answers and I won’t interfere with your decisions about how you choose to experience your last days. And I’m referring here to people who have been given 6 months or less to survive a terminal illness, are in intractable pain or unbearable agony or suffering, and choose not to prolong their life.

That choice is still limited by the ability to self-administer the medication and therein lies the crux of the problem. If the person waits too long and loses decision-making abilities, or there is a sudden change in health that precludes swallowing or self-administering the medication, or if the person makes the request too late for all the paperwork to be completed, there are complications. This is where the law comes in. We can’t have people recklessly giving vulnerable people life-ending medications, or physicians or insurance companies or the government deciding when life no longer has value.

The law that was passed in Oregon takes into account the legal aspects of the issue to the extent that we can protect the vulnerable and protect physicians, hospice workers, pharmacists and families, from prosecution for helping a dying person carry out their wishes for a peaceful ending to their physical existence. This law has stood the test of time with no slippery slope or mass extinction for 17 years and is the basis for the laws passed in Washington, Vermont, and pending a vote in several other states.

Studies among physicians reveal a majority of physicians would refuse treatment and consider Death with Dignity for themselves, but they would suggest continuing treatments to their patients. They have the hypocrisy to claim that an oath written 2500 years ago by people who believed the earth was flat, and gods and goddesses ruled over humanity, told them to do no harm and give no poison. What really is the harm if the person is dying and is in considerable pain?

Which leads us to consider religious views that claim God said this or that, or a Jesus or a Mohammed said this or that, and believe that their holy book or their dogma is the one and only truth – and that it applies to the rest of us. And many people don’t believe… that there is even a God or a Jesus or a Mohammed to have a say so in the matter. Then we have many ethical atheists who think we only have one life and have no right to end it on our own terms.

We live in a world where millions of people die every day, often sick, hungry, dehydrated, neglected or savagely beaten, enslaved, decapitated, electrocuted, eviscerated, drowned, bombed, burned alive, as if they were meaningless cockroaches. But suddenly we become concerned and know what’s best for some poor person who has been suffering terribly with some dreadful disease or condition, and only asks for a peaceful death with dignity in the privacy of their own bedrooms, surrounded by their loved ones.

I hope Brittany Maynard’s plight will be an awakening to all you who have doubts about what is the right thing to for you in a situation like she is facing and begin to see that death is a sacred journey into whatever comes next. We will all go through it, we need to recognize that it is a graduation, not the end of our journey.

The message from my near-death experience is that We Don’t Die! Death of the body is not the end of life – life goes on and there is so much more to look forward to beyond the veil of illusion.

Peace & Joy!

Diane

Planning Your Assisted-Suicide

I live in Oregon so I can legally request the

Death With Dignity option

at the time I deem appropriate if I choose, so I’ve thought about what medical treatments and interventions I would or wouldn’t accept and how I would want to die if this or that happens to my body and/or mind, whenever it happens.

I’ve been involved with this issue long enough (see article)– I was a hospice volunteer off and on for over 20 years, I’ve sat with numerous people and their families as they lay dying, I’ve been a caregiver and a counselor to the dying, I had a near-death experience 40 years ago (see article)– and I understand more about death and dying than most people who try not to think about it at all.

Most folks have opinions related to self-preservation, love of family and their life, or religious dogma, but a narrow perspective of the whole issue. So I’m just going to think out loud here to give others some food for thought… with the caveat that you continue this conversation with someone immediately after reading this and get to work on your own Advanced Healthcare Directive.

I’m 70+ so there’s that. Having seen first hand and studied what happens to the body and the mind of the majority of people as they age, I acknowledge my personal limits. Knowing my body and what I’ve done to it and for it, I’m hoping to live healthy to at least 75 but no longer than 80. Closer to 75, more likely. Beyond 80 things seem to fall apart more rapidly and sitting in front of a TV all day in an assisted living home with a bunch of other half comatose people is not something I could take for more than a minute. Lying in a  hospital bed staring at the ceiling with no hope of ever getting up again would be intolerable.

Now I know there are some 90-year olds still driving and playing golf or milking the cows and tilling the fields,  but that’s not me. There are also some 60-year old, overweight couch potatoes, who can hardly walk from the couch to the refrigerator any more.They’re on multiple medications with multiple side effects and are mostly miserable most of the time.

One’s past habits and lifestyle have a lot to say about how fit we will be in our old age, and we should be aware of our genes and our base lines so we can keep track of our physical health as we age. If you’re 40 and have diabetes, you’re not likely to make it to experience much of old age. If you haven’t cared about your health during your life, you’re not likely to have a healthy older age.

Of course one can always get hit by a bus or have a heart attack or get shot by a wacko on his own suicide mission. Personally if I’m too far gone and it would take too much or too long to restore me to a reasonable state of health, I would opt not to be resuscitated in the first place.

Certainly cracking open my rib cage, cutting off any limbs or hooking my body up to artificial life support are completely off the table. I want not to live without full use of my limbs or cognitive processes so don’t even think about it. If my heart stops, let me be. If I come back on my own, this time, I’ll talk about it. If my mind starts to disappear, you can bet I’ll be working on my suicide plan, physician-assisted or not, before I forget who my loved ones are.

So you have this pain or these symptoms you’ve been ignoring but it’s suddenly gotten worse and you can’t do things you used to be able to do so you finally go to a doctor and they run a bunch of tests and tell you that you have cancer of the blahblah and they’re going to have to take out your blahblah and then you’ll have to have radiation and chemo and then maybe you’ll have a few good months left but every case is different and they just know you’re going to beat this so here, sign these papers and let’s get started.

And you go… WTF? Because you never thought about it before, never allowed yourself to think it might happen to you or someone you love. You didn’t hear a word the doctor said after “cancer.” Your mind went blank and you felt like the elevator just dropped 20 floors in a second.

You are now spinning out of control but your doctor has moved on to the next patient to give him or her the same devastating news and you’re left to gather your wits and find your way home to tell your loved ones… but the only word that comes out of your mouth is… cancer or brain tumor or kidney failure or multiple sclerosis. Suddenly you’re a dead man walking.

You’ve never thought about it before? Never asked anyone what their thoughts are? Never asked someone who is dying what they think about? Would you want everything done? Do you even know what “everything” means? How much of you abilities are you wiling to do without just to see the next football game on TV?

You suddenly black out and wake up hooked up to machines in an ICU, paralyzed so you don’t try to rip out the tubes and  lines, surrounded by strangers with masks on looking down at you and one of them says sprightly, “Welcome back, Mr. Jones. We thought we’d lost you.”

And you’re thinking, “OMG, I was having this wonderful out-of-body experience. I was surrounded by loving beings of light and you brought me back to this? I’ll kill everyone of you!” But you can’t speak, you can’t move. Those people out there think you’re not aware, but you’re aware of everything, you just can’t do anything about it.

You’re wishing you had written that Advanced Healthcare Directive indicating you wanted no extraordinary measures to keep you alive if you were in this unfathomable condition. Unless you have a few lucid moments to state otherwise or can at least blink your eyes if asked, it is now beyond your control. You could end up a living, breathing vegetable for years.

If one is born disabled or becomes disabled through accident or illness, there is a whole added dimension to thoughts about one’s death. Depending on how dependent you are on others for care and whether you are able to communicate or are even aware of what’s happening, decisions are difficult, riddled with guilt and fear, no one ever sure they did the right thing. If you could convey your wishes, what would they be?

Assisted dying is not an option under the current laws unless you can self-administer. It has been tested by brave people with ALS and MS in the U.S. and foreign courts but euthanasia, which allows a physician to administer a life-ending drug to a person who is unable to self-administer because of their disability, is considered murder and many people fear that is opening assisted dying up to a slippery slope that could lead to the wholesale killing of the most vulnerable among us– the elderly, the disabled, the mentally ill, the poor.

Instead of showing compassion for those who are wrestling with these very personal decisions, some groups of religious protestors and bio-ethicists use fear and scare tactics, dredging up images from the Holocaust and other genocides, or hellfire and eternal damnation, to keep everyone from having control of how they end their own lives. These moral absolutists feel they are right and everyone else is wrong, and they have to protect us wayward relativists from ourselves as if we had no values. We do, just not the same as theirs.

I value human life as part of our eternal spiritual journey, I just don’t believe in the sanctity of life as the right to lifers do. Theirs is a religion based on fear and a judgmental god. I believe our Free Will gives us the right to determine when the quality of our life has fallen below our level of tolerance; that we should have the right to decide when it’s our time to die, and be able to ask our doctor to help us by giving us a prescription that will allow us to chose the time and circumstances of our own death.

Physicians, pharmacists and hospitals who provide a public benefit to a diverse society cannot impose their personal religious beliefs or moral values on patients at the end of their lives any more than at any other time in their lives. They work for us, we hire them… they are not the boss of us!

The alternative, if one is able, may be to blow your brains out or jump off a bridge or throw yourself in front of a train. What a mess! How much more peaceful and spiritual to take a pill and just go to sleep. Would you rather your family watch you suffer or allow you to die in peace? How much better for your family to be by your side instead of you having to go off like an animal to die alone.

A good way to count oneself down is to make a list of 100 things you do every day and cross items off as you can’t do them anymore until you’re down to the last 5 or 10 or 20, wherever you draw the line, then call your doctor for your prescription, pick it up when you are ready, gather your family together to say your goodbyes and have a final toast to your good death and peaceful journey home.

###

 

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 from  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

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

###

Referral service for end-of-life suicide assistance

When I first read this news release put out by  Right to Life News Today, I laughed all the way through it and kept thinking “Thank God! How else are people going to find an assisted living facility where they can have control at the end of their lives?”

But that wasn’t the intent of the author, an attorney for the Robert Powell Center for Medical Ethics, the National Right to Life Committee’s “arm in fighting to protect the vulnerable born from both direct killing and denial of lifesaving medical treatment, food and fluids.” This group opposes “infanticide and euthanasia with the same determination and vigor with which it fights abortion.”

The author was ranting about a referral service for senior living centers that also provided educational information about end-of-life planning, including the Death With Dignity law through Compassion and Choices of Washington (which has a Death With Dignity law in place).

It’s no wonder he called Compassion and Choices an “euthanasia advocacy organization.” They have that euthanasia mind-set without the understanding of the difference between killing a person without their consent and allowing a competent person to request a medication that will end his or her life near the end of  life, peacefully and painlessly.

This self-righteous attitude implying that what they think is ethical applies to everybody else just doesn’t work in this world anymore and to think they can force their religious claptrap and moral absolutist values on the rest of us is ludicrous.

I understand the concern for wholesale killing of the disabled and elderly and other so-called vulnerable people, but attempting to dictate to adults who have made their own decisions all their lives as if they are incapable of making the right choices about the end of their lives, is completely dictatorial, paternalistic and unconscionable.

Apparently they are opposed to this referral service educating the public about all issues relating to senior care and end-of life care that doesn’t fit their protocols. They don’t like the thought of a “Client Support Volunteer” from Compassion and Choices being available to assist the dying person and the family to be sure the law is followed and there are no mistakes, coercion, or prolonged suffering.

If these Right to Lifers want to be humane and constructive, instead of trying to scare people into believing their dreadful propaganda, they could provide the “information about suicide prevention services, or how to access available medical resources for the counseling and medication that can treat suicidal depression” that they complain Compassion and Choices doesn’t provide. Although, first, they need to learn the difference between suicidal depression and being ready to let go at the end of life– big difference.

Give people choices and trust them to make the right decisions about the end of their own lives. If you don’t want to do it, don’t do it!

At the end of his blog, he provides a phone number and suggests you call this referral service and tell them how disappointed you are that they promote an assisted suicide advocacy group, that you won’t use their services and will tell all your friends not to either.

I called them and said “Thank you for being there.”

###

Assisted Suicide vs. Aid-in-dying: Word Wars

“Assisted suicide” vs. “Aid in Dying”: They both mean the same thing in the context of the right of a person to make his or her own decisions about his or her own end of life, but some self-righteous, narrow-minded, dogmatic religious fanatics who are obstinately convinced of the superiority or correctness of their own opinions and prejudices against those who hold different opinions seem to think that if they stir peoples’ emotions up they can win this battle and prevent those who want this choice from being able to have it legally and without prejudice.

It has been shown that words make a difference. Words evoke emotions based on beliefs. In polls where people are asked if they approve of Death With Dignity Acts, the results are skewed against when the word “suicide” is used in place of “aid in dying.” It is an emotional issue that plays with peoples’ fears and insecurities, not just about the meaning in this life but in the next life. Self-righteous religious people hold up their beliefs about the sanctity of life to guilt vulnerable, frightened people into needless suffering at the end of life. They are trying to legislate their version of morality as if they were right and the majority of people who are in favor of Death With Dignity are all wrong.

This one guy who regularly spews his right-to-life platitudes and insists, in his most recent blog, that “aid in dying” is a euphemism for “assisted suicide” is particularly annoying the way he twists the truth to fit his beliefs. HIS beliefs! The man seems to have no compassion, just opinions about what’s right for the rest of us. Just because he hasn’t evolved consciously enough to realize the difference between a distraught person who wants to end his or her life and a dying person who doesn’t want to die but makes an informed decision to leave his body on his or her own terms doesn’t mean he won’t have his Aha! moment on his own death bed and have a change of heart.

It doesn’t really matter whether it’s called aid in dying or assisted suicide. Quibbling over semantics is just a smokescreen. A dying person who knows when this body no longer serves the soul and is ready to go home is the determinant factor.

Just a suggestion but instead of using fear tactics, put your energy into seeing to it that good laws are passed in all states that will protect people from having death forced upon them because they are senile or poor or severely disabled or by external forces and empower assisting physicians to fulfill requests for prescriptions.

We are already doing a good job of killing people with all our air, water and land pollution; not paying attention to climate changes; cutting funding to social programs; and not caring about the homeless or victims of the economic downturn, or the mentally ill who are cast adrift. Aside from all the murders and mass shootings, people in this country are starving to death, freezing to death, dying in the streets, in our forests, in rivers, in the ocean, jumping off bridges because they aren’t able to survive in this economic climate. Nobody seems to care about these people. And yet some people want to stop other people from being able to self-administer prescribed medicine to shorten a dying process they find unbearable. Tch. Tch.

 

Death With Dignity– right or wrong?

The thing about laws in this country is that there is a separation between Church and State. To me that means just because some church or religion has a rule about something based on their beliefs that doesn’t make it a law of the land. They can’t impose their beliefs on the rest of us. They may express their opinion, and it should be taken into consideration in debates, but they can’t bully the rest of us with their derogatory statements or by pouring money into negative advertising to get their own way.

Calling aid-in-dying “assisted suicide” is inflammatory and demeaning to people who are dying. It is heinous attempt to frighten people, who are already frightened because they or someone they know may be dying, to coerce them into thinking they would be committing murder or suicide, let alone incurring God’s wrath. These may be the kind of tactics some people use to scare people into supporting their cause, but they do not speak for the majority as polls have so often shown.

It’s all well and good that certain religious groups want to protect vulnerable people from being murdered for convenience (and they should be), but to impose their view of morality on others, especially in personal and family matters, is beyond arrogance and presumption.

There are people who believe in the sanctity of life– that it is a gift from God and only God determines the time of death.

There are people who believe taking one’s own life is a sin, punishable by eternal damnation.

There are people who believe suffering has some redemptive value and should not be interfered with by hastening death.

There are people who believe when life is over, that’s it, dust to dust– so it does not matter what you do while you’re here. There is no God, no Heaven, no Hell. The ones with the most toys while they’re here, win.

There are those who believe one must follow the practices of a certain religion to get into “heaven” or be rewarded.

There are those who believe in a loving and forgiving God who welcomes everyone home.

There are those who believe that leaving one’s body is an adventure we get to go on at the end of this life, who look forward to their transition.

There are those who believe we are light beings who pass in and out of physical environments and less dense dimensions of the Universe as part of a greater journey, and death is just a transformation.

How do we take into account all these different beliefs when creating laws to regulate end-of-life procedures while protecting the vulnerable?

We give patients the right to make their own decisions, according to their own beliefs, regarding the care and treatment of their own body at the end of their lives, including when to end their own lives if they so choose… with the caveat that it’s a well-considered, educated decision. But it’s their business, not mine or yours or anybody else’s… least of all the government or the hospital or insurance companies or any religious group.

Protections need to be in place to prevent force or coercion. Hopefully we’ve learned from the atrocities and genocides of the past and have no need to repeat them. The elderly, the terminally-ill and people with disabilities need to make their wishes for future healthcare planning known while they are capable of doing so. They get to choose.

Those who want to do everything, try everything, fight on no matter what or how long, should write that in their Advance Directives. People who choose no treatment or to stop treatments and let nature take its course should have that written down.

Those who want to opt out early should be able to request a prescription for life-ending medication and not be forced to starve themselves to death or suffer unbearable agony. It has to be written down and Advance Healthcare Directives have to be honored.

This whole thing about whether a dying person asking for a lethal prescription is depressed is just ridiculous. They’re not just having a bad day, their boyfriend didn’t just break up with them, they don’t want to die… they are dying. Their doctor has told them there is nothing else to be done… go home, get your affairs in order, call hospice, you have 6 months or less to live. They have thought long and hard about this and made their decision with a clear mind before they made their request. And statistics show that most people who make the request don’t end up taking the pills. Just knowing they had the option was the comfort they needed and they are able to die peacefully at home in their own bed.

Then we have doctors who are against participating in assisting a dying patient by writing a prescription knowing if the patient takes it, it will end his life. They have their oath of do no harm, give no poison. They became doctors to heal people, not to kill them. Even though doctors and nurses are presumably the most qualified to administer drugs, the American Medical Association, the American Nurses Association, and the American Society of Anesthesiologists say it is contrary to the Hippocratic Oath and would erode the public trust in medical professionals.

When it comes to capital punishment, medical ethics prevent doctors from participating in executions and they apply the same rationale to dying people not on death row. What often happens in prisons is that lethal injections are carried out by inexperienced technicians which increases the possibility of mistakes that can cause complications. What happens at home without proper medical care, when people take matters into their own hands, is often botched suicide attempts with dire consequences.

What is needed is a new medical specialty to insure proper administration of life-ending drugs and personal attention to  patients to assure a peaceful transition according to their last wishes. Patients need to be fully informed of procedures, effects, timelines, and so on, and the family about what to expect and how to plan by a competent, comforting person. This could be retired doctors or nurses who have the compassion to help people die on their own terms because prescriptions can be written and proper assistance rendered, and certain regulations need to be in place to assure death with dignity. We can work this out so medical care doesn’t end until after death.

It isn’t a matter of right or wrong; it’s a matter of choice.

• • •