The coronavirus is a great subject when it comes to talking
about both fear and death. Currently, it
is the lead topic in the news and also the number one trending subject on
YouTube. Most of the information you
will find is largely scientific rambling or fear and hype being promoted as
At GoGracefully we are always trying to find wisdom in subjects
that other people accept as a grim reality, just like death. This gave us the idea to ask the kids how
they feel about a pandemic and the prospect of dying from a virus. Their answers may surprise you!
“Except you become as a little child, you shall not enter the kingdom.”
We created a short video in which we obtained a perspective
on the coronavirus through the minds of a 12-year old, a 10-year old, and a 7-year
old. These children are somewhat unique in that
they do not watch any TV and receive very little screen time as part of their
education. Their understanding of
fractions is also enlightening. You can
watch that video here:
Perspectives On Fractions
In essence the children found the subject of the coronavirus somewhat ridiculous. The idea that less than one hundred deaths in relation to almost 8 billion people on earth was enough evidence for them to exhibit no signs of worry. Additionally, when the kids were asked about the prospect of dying from this disease, they again showed no signs of fear or anxiety. As a matter of fact, they cited their faith in God and their trust in life eternal as the very essence of their strength.
This idea has inspired us to create an ongoing playlist of videos to capture the wisdom of children. To learn more about these kids, click here and scroll down to the Whippersnappers.
If you or someone you love is dying, here are five things to know. As a certified death doula, I have had a lot of experience helping folks die and get ready to die. What follows are five important things to help ease the dying process. Remember, we are all dying.
As you review these five things to know about dying, please keep in mind that they are all calls to action. Reading about them is easy but completing them is challenging. It seems to be the modern human condition that we hate to face death, especially our own. It is time to change that.
We covered these five things to know about dying in a recent video filmed in Phoenix, Arizonia. This video includes some spectacular images of a predawn hike up Camelback Mountain in Paradise Valley. It explores the importance of each of the five important things to know about dying. It also provides helpful tips for completing them. There are also some helpful links below. Please watch it and like it 👍🏽to help support our educational mission.
1. Create an Estate Plan
Contrary to popular belief, an Estate Plan, which deals primarily with your material possessions, is probably the least important thing to do when preparing for end of life. As a death doula I have witnessed many deaths and never once have I heard the dying person express any concern about their material belongings.
Nevertheless, it is still an important step in preparing for end of life. At GoGracefully we make creating all your estate planning documents easy. In just a few clicks you too can have your estate plan completed. On our services page, you will find the five most common documents used for estate planning. We have also created a playlist on YouTube with helpful tutorials to get you started.
Are you are challenged by computer interviews and the legal jargon? If so, we also offer support services. We have two levels (scroll down to Beyond DIY) that fit the needs of most people. We are also willing to customize a plan for your specific needs. The cost for this type of service is a small fraction of what most people pay an attorney.
2. Make a Living Will
A living will is a document that addresses how you want to be cared for in the event you are unable to speak for yourself. It is a legal document that appoints a person to be your proxy, sometimes called the medical power of attorney. It is legal in every state and there are several different names for these documents including: healthcare advanced directive, medical power of attorney, living will, Five Wishes, and still others.
The process whereby we create a living will forces us to examine many questions that deepen our understanding of what it means to die. When it comes to dying, of the five things to know, this is perhaps the most universally beneficial step—but not the most important. This is because an honest examination of these questions is very revealing about how we approach death.
In creating a living will, we need to really understand what “life support treatment” means and when it applies. For example, it is one thing to know what CPR is and another thing entirely to understand the beneficial outcomes in proportion to various injuries and disease processes when CPR is used. Ask almost anyone if they would want life support treatment and the answer will be yes. However, when you paint a clear picture of potential injuries and illnesses the desire for life support goes down. Again, in my years working as a death doula for hospice, I have rarely seen a patient express interest in any of the invasive procedures that are included under the umbrella of life support treatment.
3. Face Your Fears
At first glance, this important thing to know about dying may seem cliché. This is far from the truth because so few people are truly willing to do it.
When we peruse a list of phobias it is easy to see the majority of the top fears include one common element. Can you figure out what fear of snakes, dogs, spiders, heights, and many others all have in common? The answer is pain. And for many of us, death equates to pain and suffering.
Is this true? Certainly it is and was true for some. However, many deaths, even deaths from painful disease, can be managed in such a way as to eliminate or dramatically reduce pain. (This subject will be addressed in depth in a future article on this site.)
Facing fears requires a degree of honesty that few are willing to practice. As a start you can try examining some questions like these:
Who am I willing to die for? My spouse? My children? A stranger?
Is there a difference in my answers? Why?
Do I want strong pain medication like morphine if I have pain?
How do I classify levels of pain before I take medication for it?
Am I willing to sit through pain for the goal of mental clarity?
Is there any reason to be hopeful around death and dying?
Do I have anxiety over money? Why?
Am I willing to speak my views in public?
If yes, does it change when the people are more numerous or more important in the eyes of society?
Once these questions (and many others) are answered it will become quite clear that there are things we fear. Often times patterns will become very obvious. For example, a devote religionist may find great comfort in the life after and thereby not fear death, but at the same time the thought of suffering great pain in the process is terrifying.
Again, reading about this information will not help you on the journey. Take a minute now and create your list of questions and answers so you too can face your fears.
4. Bring Your Spiritual Practice to Dying
This is the most important of the five things to know when dying. Whatever spiritual or religious practice we enjoy it has a huge role to play when it comes to dying. The problem is that so few of us actually rehearse mentally the way our faith will will buoy us in the end.
Part of the problem is that we fail to separate the dogma of theology from actual religious experience. Theology might say we go to heaven, but speaking to the Source of all comforts us in a way that goes beyond words. The atheist may rationalize God into obscurity, but his willingness to live a life of kindness can create a deep internal comfort that can be called forth at will. The devote Christian may insist that Jesus will save her soul, but she might have no visualization of what that might look like. Who cares if any of the above are right or wrong!
The point of bringing a spiritual practice into dying is so we can have a comforting mental picture when our time to face the transition of death is upon us. Just as money matters fade away on the death bed, so too, do all theological contentions. What matters then is our mental poise. What is comforting us in that moment? Moreover, how are those present using our rehearsed faith centered practices to further comfort us in our time of travail?
Share Your Plan
The last of the five things to know when dying may seem simple, but like the others above we must go deeper. Simply handing the executor a copy of your will is not the same as explaining to your heirs the rationale of your choices contained in the will.
Consider the living will discussed above. If that documents states that we intend to forgo pain blocking medication in favor of mental clarity there are many factors to address. Did we choose a medical power of attorney (MPOA) that will honor such a choice if we are exhibiting pain? Loved ones hate to see their beloved suffer and it will require a strong will to honor such a request. Did we inform all involved of this choice? Doctors and institutional care facilities will often ignore such a request unless the MPOA is a very strong advocate for your wishes.
There is also something called a vigil plan. In it we state how we want the final days and hours to unfold. A good death doula can help create such plans. Such plans are then posted in the place we will spend our final time here on earth. Vigil plans are usually less than one page long and communicate to all present how we want the environment managed. Would it have any significance if we could control our final surroundings?
Who do we want in the room?
What sounds do we want to hear?
What smells are relaxing?
Do we want to be touched?
Is sadness welcome?
The list goes on . . .
Please Die Now
Truly, if you are dying—and we all are—these five things to know can make a huge difference in how things unfold. Each of them will require some effort, but in the end the payoff will far exceed the invested energy.
When I tell people I am a death doula they usually show a sad face and reply, “Wow, that must be really hard.” Nothing could be farther from the truth. Helping others at this most intimate and magical time is truly a blessing and it is mightily confirming of a loving universal plan. There is no other way I can explain truth, beauty, and goodness I have witnessed.
Yes, there are happy endings or as some might call “good deaths.” In my experience, such final moments seem to go disproportionately to those who are willing to die now.
Do you need or have a living will in Arizona? Then you need to read this article, especially if you don’t know about some troubling aspects associated with assisted living and hospice care. We are going to show you two disturbing realities that you should avoid if a peaceful end of life is important to you or someone you love.
As a certified end of life doula I attend many deaths. GoGracefully has been in Arizona for the last 3 months, supporting my 95-year-old uncle, who was diagnosed with terminal cancer. To see what Uncle Sonny had to say about the work we are doing click here on this video. Well, I am sorry to say we lost him on Christmas Eve, but not in the way that you are thinking.
At GoGracefully we are always promoting spiritual consciousness over material preparations, when it comes to end of life. Because of this, we were prepared to gracefully deal with a horrendous situation that came to a head on Christmas Eve. Hospice and the assisted living center he lives in failed him. And they will fail you, too, if you do not avoid the pitfalls we are about to share with you.
The Importance of a Living Will
First, let’s talk about the importance of a living will. Arizona is the state where my uncle created his living will, however, what I am about to share with you applies to all 50 states in the union. A living will is an important legal document because it communicates your wishes and gives your loved ones guidance in making difficult decisions when you are unable to do so yourself. On the services page at GoGracefully.com we provide a link to create all your essential documents, including a living will for any state. You can create your living will and all your estate planning documents for less than $40.
Uncle Sonny’s living will was very specific with respect to how he wanted his pain managed. He did not want opiates unless his pain became unbearable, and he wanted all other medications to allow him to keep his mental clarity for as long as possible. Not only did he write this in his living will for Arizona, he also expressed it verbally to me on multiple occasions.
Being his medical power of attorney, I took his living will for Arizona very seriously. In the months I spent with him he was never in such severe pain that I could not support him using alternative therapies like guided meditation and massage to relieve his discomfort. Often times, I could help reduce his pain of 6 on the 10 scale down to a zero within 30 minutes.
Uncle Sonny was a unique person in that he lived his life largely outside the paradigm of modern medicine. He shopped at health food stores, had cabinets full of supplements, opted for massage and chiropractic care, and maintained a strong and vigorous body until his cancer diagnosis. Even then, he insisted that he could cure himself of a massive stage 4 cancer in his chest. His tells of spiritual consciousness and faith in a very touching way in our video entitled “Estate Planning vs End of Life Planning.” I encourage you to watch it!
How Hospice & Assisted Living Will Fail You
And now the sad part. I am referring to him in the past tense here, not because he has died, but rather because his mental clarity has been eroded by the failure of both hospice and the assisted living center he trusted with his care. Both companies failed to honor his living will.
In essence, due to internal policies and procedures, these companies were unable to honor his most important wish for mental clarity at end of life. His deterioration was painful to watch and I did my very best to insist that both hospice and the care center honor his wishes. My efforts failed due to entrenched beliefs, inflexible policies, and even hostility. Within hours of telling the director of the care facility that she needs to honor his living will in Arizona as it is written, a new living will in Arizona was created. I was removed as the medical power of attorney. You might be asking how this could happen?
Simple, convince the patient to change his living will. Patients on strong medications, like opiates can be easily influenced. A new living will—complete with a new medical power of attorney—is just a signature away. Remember, a physician must declare the patient is mentally incompetent before the medical power of attorney springs into action. Interestingly, the patient will likely never see another physician once hospice is assigned. There are also no physicians on duty at assisted living facilities.
If you or your loved one value mental clarity at end of life, and don’t want to be doped up on haloperidol and morphine like my uncle was, consider these potential pitfalls as you decide on end-of-life care. These hazards are particularly relevant when either hospice or assisted living facilities are involved.
The Pain Management Pitfall
The first pitfall is a cultural phenomenon related to modern medicine and pain management. In short, most people today are more afraid of pain than they are of actually dying. Couple that with modern medicine’s ability to relieve pain in seconds and suddenly alternatives become too costly or time consuming. Forget not, there are also costs for such quick relief. Those are loss of mental clarity, drug side effects, and dependence on highly addictive opiates.
So, how did we die before opiates? Certainly many people suffered, however, many others received comfort and love by those close to them. Loving touch and massage were essential to end of life care. Acupuncture, hypnosis, guided meditation, and herbal remedies were—and are still—part of a good end-of-life care plan. Moreover, greater emphasis was placed upon mental and emotional preparation for death. In many cultures, death and the associated pain were an essential rite of passage. Am I saying that modern people have become cowards? That is for you to answer for yourself, but I can assure you, my uncle was not a coward when he wrote these words in his living will for Arizona:
“I wish to die naturally with minimal interventions. Please minimize pain management with opiates and other mind altering medications unless I am in severe pain.”
Edward Milton Barber III
The second downside when blending hospice and assisted living is the bureaucracy involved. Both types of care are governed by extensive laws and regulations. Additionally, such institutions adopt policies that enable them to function in the difficult climate of rules and regulations they must comply with. Allow me to make this more understandable.
As a hospice
volunteer for the past 10 years I have sat in the homes of many a dying person
receiving hospice care. In these homes I
witnessed hospice provide what is often referred to as a “comfort care kit.” These kits include many different drugs and tools
to support difficult end of life situations.
If a family is wise enough to obtain the assistance of an end of life
doula, the family will also be benefitted by having an on-site guide and
resource for addressing the challenges that come up at end of life.
In these situations, bureaucracy is virtually eliminated. The patient is able to make clear their wishes and families are able to carry them out. If mental clarity is a top priority, it will most certainly be honored using the alternative therapies mentioned above. In my years with hospice, I have witnessed many unopened bottles of morphine returned to hospice after the patient’s death.
Watch Out Boomers
When this is
contrasted with the care my uncle received, we get a glimpse of an ugly
phenomenon that will only get worse as the baby-boomer generation ages. In Uncle Sonny’s case, the system seemed
unable to respond in any other way than giving drugs. After all, the hospice nurse shows up once or
twice a week for an hour where his bodily functions are assessed and his drug
dosing is reviewed. This is not even close to what a patient needs in terms of
This is where the assisted living facility is supposed to fill the void. Yet, they were unable to do so. Here’s why! In the care facility where my uncle lived, there were only two care providers per shift—not even nurses—caring for 20 patients in different rooms. Those rooms housed patients with complicated symptoms and diagnosis including incontinence, dementia, Alzheimer’s, terminal cancer, wheelchair-bound amputees, and more. Each of these patients has medications which are locked in a cabinet and dispensed to patients regularly and audited every shift change.
It should now be clear that even in the presence of a strong advocate for the patients living will in Arizona, or any state, it is a certainty that alternatives to opiates will never be used, there isn’t the time or energy. The bitter irony of this truth is seen by the fact that both the hospice facility and the assisted living center cast me as the villain for standing up for his mental clarity. This act left him without a single family member to love and support him. Indeed, they dubbed me a trouble maker and threatened to escort me from the building and ultimately locked his door to keep me from seeing him for anything other than a supervised visit.
Changing A Living Will is Too Easy
24 hours after my strong petition for my uncle’s rights to both hospice and the care facility, he had a new living will in Arizona and was telling the staff he no longer wanted visits from me. This was just days after they tripled his morphine dose and started him on a regular dose of haloperidol to “help with his agitation and allow him to get some sleep!” You can see for yourself that haloperidol is a strong anti-psychotic drug effecting both verbal and motor control. Certainly, a person on this drug should not be executing a new living will. Sadly, my uncle is no longer even the person I knew just a week ago.
Every living will addresses pain management, yet few people consider the consciousness altering effects of typical hospice drugs. My uncle was someone who did think this through carefully. Nevertheless, the people he trusted with his care let him down. It’s easy to ask someone if they are in pain and hand them a pill. It is much more difficult to talk to them about their pain, offer alternatives, and guide them though it using alternative therapies. My uncle’s experience is typical for anyone wishing to maintain their mental clarity at end of life. Especially, when housed in an assisted living facility and on hospice care. Unfortunately, we need only to follow the money to see how morals can quickly become revalued.
Uncle Dies Alone
I received a phone call on January 13, 2020 from my uncle’s dear friend. She informed me that he died in the early morning hours of the day. She also told me that his favorite nurse (caregiver—not an RN) checked on him at midnight and he was doing fine. Hours later, when she checked on him again, he was dead.
Edward Milton Barber III died alone, in his room, without anyone in attendance. This breaks my heart because of all the lovely conversations I had with him, where he reminded me of a conversation I had back in 1989. He said to me the very week this facility locked me out the following:
Jim, you always said you would be there for me in the end. I can’t believe a young man would have said such a thing 30 years ago. And now you are here with me. This gives me great comfort. I love you.
Dear Sweet Child, Mom says she is gathering the women in your life to celebrate an important rite of passage. I trust your new maturity is women’s work, but I too, want to be a part of this important time in your life. I hope you will benefit from having a man’s perspective on womanhood as well as the views of your sisters.
As you read this, be sure to note that these views will not be common as you encounter and befriend boys and men. What you are about to read comes from years of experience . . . and . . . pain from . . . disappointment with . . . resolve to find . . . hope for . . . and ultimately faith in the other half of the human species.
Amazingly, that journey resulted in you! And so my dear, always remember:
A woman is strong, much stronger than any bulging muscle on a man. She uses her strength to nurture, love, and create stability. She does this in her family, her community, and in the world. Her strength is renewed each month as she is reminded of her creative power, a power that only she and her sisters possess;
A woman is brave, much braver than any soldier running into battle. This is because she recognizes deep in her heart that the future of all life on this planet will be shaped by her actions, and not by the power and control of nations. Stated simply, her decisions sculpt the future of human character. When she suckles her young and coos into the ear of the developing mind, destiny is shaped;
A woman heals, much more than the best doctors of our time. She does this often, when she gazes lovingly into the eyes of the injured little ones and speaks words of compassion. In doing so, she teaches us all that the universe is both loving and friendly;
A woman provides, much more than even the richest man on earth. Indeed, she is often the very source of such a man’s wealth. She does this by keeping her heart focused on service. Somehow, she knows how to lead from behind, and being a man, I know nothing more of this mystery;
A woman endures, much more than the toughest of men. For ages, these tough men have failed to see her light, and now she stands boldly in the dawn of her time. She remains undaunted, forgiving, and willing to do what she has for eons – give birth to a new day;
A woman is powerful, more powerful than the nuclear bombs created by the men of our time. She radiates this as she shines her truth, her beauty, and her goodness upon the world. Even men must know this in our subconscious because we call a woman who is stunning, amazing, or sensational a “bombshell.”
A woman believes, even more than the world’s most devout religionists. For she knows that even today there are few religions that give her her rightful inheritance. Nevertheless, she patiently turns within. There she finds—all that true religion promises;
Who needs an end of life planning workbook? Most of us are familiar with Estate planning, however, few of us address the deeper issues of creating a real end-of-life plan. In this article or Video Here, you will find information on the GoGracefully end-of-life planning workbook. Discover this excellent resource to support all your end-of-life needs—please read on!
Most of us believe we need a lawyer to do our Estate Planning. This is not true, the vast majority of us, need is a little guidance and encouragement. Technology has made the creating of these documents simple, and easy to create in minutes or hours on a computer.
Estate Planning is really a small subset of what has become known as End-of-Life Planning. It is the goal of this article to give you general information about end-of-life planning, access to an end-of-life planning workbook, and to direct you to affordable resources to accomplish this critical work.
GoGracefully has created a comprehensive workbook to put all this into perspective. We call it the PonoBook. Our end-of-life planning workbook addresses material decisions, psychological and emotional choices, and spiritual preferences. The GoGracefully PonoBook derives its name from the Hawaiian word “pono.” Pono has over 80 possible meanings, which are all related to righteousness. Because of this, creating an end-of-life plan is the right thing to do for both our loved ones and ourselves.
Sadly, most people are focused largely on the material decisions. Unfortunately, these issues are of little concern at end of life. The PonoBook starts with these material decisions. We provide end-of-life planning worksheets to complete the 5 essential documents most of us need. These documents include: an advance healthcare directive (living will) for medical decisions, a power of attorney for financial decisions, a will, a trust, and a quitclaim deed. Our workbook includes a comprehensive worksheet for collecting all the information pertaining to your material decisions. Thus, we provide a master checklist to help with the deeper aspects of end of life planning.
Three Critical Aspects of Planning
As our title eludes to, there are three critical aspects of end-of-life planning. The material decisions mentioned above are often what leads to hiring an attorney and spending thousands of dollars. This is no longer necessary for those of us with basic computer skills. The GoGracefully services page makes it easy for you to link directly with attorney-created documents. These documents are filled out in the privacy of your home. So, get started now. Or read on to discover the other two critical elements of end-of-life planning.
The psychological and emotional choices are briefly addressed in the document known as a living will. Most living wills are written in legalistic language, which masks the important choices contained in such a document. No matter what state you live in your psychological and emotional decisions are enhanced by the study and completion of an additional resource known as Five Wishes.
The Five Wishes document, often referred to as “the living will with heart and soul,” provides a much deeper exploration of these decisions. This is true, even in Texas and seven other states that do not honor the Five Wishes document. In those states, the Five Wishes document can become an addendum to the legal version of the advance directive. GoGracefully offers a free copy of the Five Wishes to all our Essential and Personalized Support Service clients.
A truly deep exploration of emotional and psychological choices at end of life goes beyond the documents mentioned above. To help people sincerely go gracefully we created a section in the PonoBook to cover this important area in more detail. We specifically addresses three critical components of end-of-life exploration: how to create a vigil plan, how and why we can create meaningful legacy work, and how to communicate your wishes with loved ones—especially those who may be challenged by your wishes.
The vigil plan is a one or two-page document that is actually posted in the place you will spend the final days and hours of your life. This document makes clear to all who are present—loved ones and service providers—exactly what matters most to you. There are many other details that a properly prepared vigil plan addresses, which are found only in the PonoBook.
Additionally, the PonoBook lays a foundation for matters associated with communicating with others about these personal choices. We include tangible resources for healing and forgiveness. There are also several exercises you can complete. These will aid you in your efforts to create peace with the people in your life.
Lastly, with respect to our emotional and psychological work, the PonoBook offers insight on how to share your legacy. We all have a story. Legacy work is where you pass your truth, beauty, and goodness on to all future generations. Legacy work is done alone or with the help of others. It also appears in many forms, which are thoroughly addressed in the PonoBook.
The Sacred Realm
The last part of the GoGracefully workbook deals with the sacred realm. We offer nine unique exercises to help you explore the role of spirituality as you approach the transition of death. This exploration is open to everyone from the most devout religionist to an avowed atheist. All can benefit from the wisdom distilled down from generations of great teachers and texts referenced in the workbook.
GoGracefully remains committed to advancing understanding of death while serving the living. We are a resource, a support service, and a place to begin the practice of living more fully. Our PonoBook is a valuable tool for anyone who is overwhelmed by end-of-life planning. It is also an excellent resource for people who are technologically challenged by the idea of do-it-yourself legal documents.
Remember, dying gracefully is tied to the art of living joyfully. We offer an end of life planning workbook, support creating living wills, coaching for the creation of all end-of-life documents, and personalized services to guide anyone through online creation of legal documents. Start now, and go gracefully!
On November 3-5 the North Hawaii Hospice hosted the first ever death doula training in Hawaii. GoGracefully had the pleasure to help facilitate this event.
There were fifteen participants over a three day intensive workshop. The training included many exercises to develop skills associated with being present for dying people. There were also many practical aspects for serving the dying taught. Subject matter ranged from recognizing signs at the end of life to providing comfort for both the patient and the caregiver.
The new trainees created their own end of life plans, completed hands on patient care hours, and will attend continuing education classes. Any death doula training will address how the last days can look.
GoGracefully.com Joins The Effort
To compensate for this unmet need that exists in our modern world, GoGracefully has created a more extensive training program. We aim to train thousands of GoGracefully Guides. Our program focuses on the critical aspects of material, emotional, and spiritual support. We address both the dying person and their loved ones using a holistic approach.
This is an ongoing and intensive training that involves working alongside a Gogracefully Master Guide. Trainees will learn to provide non-medical support for all dying people. Wow, that is learning how to support everyone! Creating support for the emotional and psychological aspects of death is a vast subject. To view more details about this program, click here.
For those interested in discovering the difference between end of life planning and estate planning here is a brief video to help you. We also have another video to help you address five important things to know if you are dying, and WE ARE ALL DYING!
Leaving Hawaii is hard, but Christmas in the Intensive Care Unit is worse. People often tell me how lucky I am to live in Hawaii. When they say this I usually suspect that they have a picture in their minds of soft sandy beaches, palm trees and mai tai cocktails. The truth for me is something quite different.
My family and I live in a very small town in the North Kohala district of the Big Island. There is no traffic, no fast food establishments, nor any real reason to go fast. Those of us lucky enough to call Kohala home, are blessed. Kohala is filled with the beauty of the land and the charm and character of the people. Aloha is truly alive in Kohala.
KOA to SFO on XMAS
So, as I kiss my wife and children at the airport on Christmas day, I know I will be homesick before long. I also know that I am going to San Francisco. There I will be thrust into the intensity of what most call “progress”. What I do not yet know, is that I will soon be forced to make multiple difficult and painful decisions. Ultimately, this will lead to the decision to let my sister die.
The elevator to the Intensive Care Unit (ICU) on the 9th floor at UCSF Medical Center is very fast. It moves between floors quickly, but it seems to sit idle for a disproportionate amount of time when the doors are open.
We stop seven times before we reach the 9th floor. As the doors open I look into a large room filled with people. Some are sleeping in chairs next to tables scattered with empty pizza boxes and other fast food bags. Rambo is stitching up his own arm on the television. I quickly turn right and walk past that room. Days later I find myself in that room despite the feeling of helplessness it conjures up in my mind.
A Strange World of Beeps and Moans
Behind the glass doors of the ICU I enter a world that never stops. There are beeps, moans, alarms, strange smells, miles of tubing, coffee cups here and there, giant rotating cylindrical beds, constant movement, stoic parents, brightly colored stuffed animals, white coats, tattooed nurses, monitors with jagged lines and flashing florescent colors, withered children, large windows with views of distant hills, blood soaked bandages, and finally, my sister, Jennifer.
My adult daughter, Audrey, who lives in the Bay Area, is with me to see her auntie. We are both somewhat surprised as Jennifer greets us with her big white-toothed smile. Then there is a sudden crash of hope when she tries to speak. Her voice is hoarse and her thoughts are muddled, but she is clear about one thing when she looks me in the eye and says, “Jim, I want to go home.” Before I can respond we are interrupted by a retinue of white coats all standing behind a smiling internist named Sriram Shamasunder who looks to be about 30 years old.
The conversation then switches to hushed tones as this team of physicians explains to me the seriousness of the situation. The medical terminology and speculation abound. Having been a paramedic when I was younger, I am able to follow much of what they are telling me about Jennifer’s condition, but I quickly become lost when the discussion turns to blood test data and transplant qualification criteria.
Liver or Death
The essence of what I learn in the first 30 minutes of being in the ICU is that Jennifer will die if she does not receive a liver, and perhaps even a kidney transplant. The conversation concludes with Dr. Shamasunder telling me that a final decision will be reached at a group meeting of “the team” on Friday—in just 4 days.
As the group departs the bedside, an orderly arrives with a unit of blood for Jennifer’s nurse. As the nurse and orderly enact a verbal dance involving blood type and patient identification, my eyes trace the tubing from the now almost empty bag of blood hanging above my sister’s bed, to a location on her neck where the central line appears to be leaking. When I point this out to the nurse she says, “Bleeding can be a side effect of liver failure because the liver also makes clotting factors. Currently, your sister needs continuous blood or she could bleed to death.”
Congratulations on finding this website! What you are about to discover will change your life and your death. This unique approach to end of life planning was born on December 30th 2016, the day my sister died.
Jennifer was only 50 years old when she passed. Like others at that age, she didn’t think much about dying, nor did she plan for it. On the other hand, our mother, Janice, was 85 years old when she died, and she was ready. She had created a trust, a pour over will, and a living will. She had also made many other critical end of life decisions. Mom even made a video about her life. Amazingly, she wrote letters to each of us children in her final week of life. While my mother’s preparation was adequate, she only chose to do some of the items found in the GoGracefully PonoBook.
Jennifer, on the other hand had done the five or so things. She did what most of us who fancy ourselves prepared for death have done.
She had the following:
Pour Over Will
Financial Power of Attorney
Medical Power of Attorney
A brother (me) who knew about those documents
What she did not have in place, however, is the essence of this narrative. It is also the reason that my life is now dedicated to the mission of GoGracefully.
Our Mission & Purpose Advancing the understanding of end of life while serving the living
James Land, Founder
Creating Peace of Mind
As I mentioned above, there are many things that we can do to create peace of mind in both life and death for ourselves, for our loved ones, and for the world at large. Here are five to get you started. The more awareness we bring to the other critical choices and actions—besides the big 5 above—the more peace and stability we will create.
On her death bed, my sister did wonder aloud, “What am I dying of?” Which is a good question we should ask ourselves in the best of health. However, my sister’s biggest mistake was not having a living will.
A living will is a written statement detailing a person’s desires regarding their medical treatment in circumstances in which they are no longer able to speak for themselves. A living will is also known as an advance directive.
There are many styles of living wills available and some need to be specific to the state you live in, but they all, essentially, accomplish the same end. They ensure your wishes are known if you become unable to speak for yourself, and that is exactly what did not happen in my sister’s case.
(This is such an important document that GoGracefullyTM will give you a free copy of the only “living will with a heart and soul.” It is called 5 Wishes and it usually costs $5.00, but we cover this cost for all of our members.)
The Story (Part 1)
It was Christmas Eve 2016 in Hawaii when the call came, my 3 daughters (all under 9) were in the state of mind you would expect when I pulled myself away from them to answer the phone. It was a doctor from the emergency department in Sonoma, California. Apparently, Jennifer, who had a history of liver disease, was having some trouble breathing due to ascites and she was being transported to UCSF medical center to be evaluated for a liver transplant. When I asked the doctor how serious it was and if I could spend Christmas with my children before flying out he replied, “If you want to see her again you should not delay.” As I found out just 5 days later, the doctor was correct. So, I left my wife and children on Christmas Day and began the most difficult journey of my life.This story continues under the title: Christmas In The Intensive Care Unit