Both individually and collectively, we are paying an enormous emotional and financial price for being silenced by our society's taboo against talking about death and dying. Other societies educate their members about the reality of death and the processes of dying and grieving. We do not. We are left to figure it out for ourselves, relying on doctors and funeral directors to tell us what to do once we are face to face with death. We don't know what to say, what to do, how to cope or to grieve. Most of us simply let "the experts" lead us around by the nose -- too stunned to take charge of the situation ourselves.
Consider the following observations and facts about the costs we bear for this:
(1) Eighty percent of Americans do not put their personal affairs in order before they die.
(2) In 2009, Medicare paid 55 billion just for doctor and hospital bills for the last two months of patients' lives. That's more than the budget for the Department of Homeland Security or the Department of Education. And, it's been estimated that 20-30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the Federal Government with few or no questions asked. ("The Cost of Dying," 60 Minutes, 8/8/10
(2) Many doctors view their inability to "cure" a patient as a professional failure and are therefore reluctant to suggest palliative care even when they know there is little to no hope of recovery. Largely as a result, the average stay in Hospice care is just two weeks.
(3) Most hospital patients, relying on doctors to advise them of their healthcare options, fail to take into consideration the vested interests of the doctors and hospitals. As a result, many terminal patients are given false hope by a frenzy of tests and procedures that do little more than protect the doctors and hospitals against potential lawsuits and provide financial benefit to the doctors, hospitals, insurance and drug companies while denying the patient the opportunity to transition into his or her process of dying.
(4) A vast majority of Americans say they want to die at home, but 75 percent die in a hospital or nursing home...18-20 percent of Americans spend their last days in an ICU. (("The Cost of Dying," 60 Minutes, 8/8/10)
(5) Most of us have no idea how to discuss the reality of death with our loved ones and are thereby denied the opportunity to share our thoughts, feelings and fears with each other. As a result, many terminally-ill patients put a smile on their faces and silently suffer in emotional isolation.
(6) The average funeral in the U.S., including a cemetery plot and grave, costs between $10,000 and $12,000. Only about 5 percent of Americans preplan their end of life rituals. The rest leave it to their loved ones to figure out while grieving their loss. Bereft family members rely on funeral directors to tell them what to do. Left to second guess what would have been meaningful to the deceased, loved ones typically overspend for fear of not doing enough. Most of us are not even aware of the many less costly and, in many cases, more emotionally gratifying alternatives that are available for saying our final goodbyes.
(7) Legal fees for a simple will are several hundred dollars. The legal fees associated with finalizing an estate where there is no will or a poorly written will run thousands.
(8) While we silently suffer with each other, the medical, accounting and legal estate planning industries are booming at our expense.
For those who agree with me that we need to make some fundamental changes, I'd like to suggest that we begin by breaking through the taboo against talking about death in this country. A good place to start is to explore our own thoughts, feelings and experiences. Taking ownership of our own point of view empowers us to more fully participate in making meaningful decisions on our own behalf and that of those we love. The alternative is to continue to live in denial, fear, silence and paralysis.
I invite you to consider the following questions. You might want to find a quiet place and write your responses:
1. Which of the following best defines how and what you think/believe happens when we die? (More than one might apply).
2. Did anyone educate you about death? If so, who was it and what did you learn?
3. Have you experienced the death of a loved one? If so, what was that like for you? How did it change you?
4. do you think and how do you feel about your own death?
By breaking the silence within ourselves on this topic, we set the foundation for making decisions that are in alignment with our deepest beliefs and values about life and death. It is in claiming these values and beliefs that we are best able to meet our death on our own terms - with greater self-determination about such things as our end of life healthcare, the disposition of our belongings and the kind of end of life ritual that would be appropriate for us. It also supports us in coping with the death of our loved ones.
Next week, we'll look at talking with doctors and loved ones about our beliefs and preferences. I encourage you to share your comments below or email me at judithjohnson@hvc.rr.com.
Paul Brandeis Raushenbush: And What of Tragedy? A Eulogy for Sam Who Died on His 20th Birthday
My parents many years ago decided to go coffin shopping and also purchased their plots to not burden me and my siblings with the financial stress or other technicalities when their time came to croak {as my Mother so lovingly put it}.
My uncle recently passed and this prompted me to think about my beliefs on death and how I am ready to let go of old beliefs passed down to me that now seem outdated and way too sad.
I find nothing more liberating to the human spirit than to embrace death during your bright, happy, healthy, days as a natural, beautiful part of life so that when that day does arrive you leave your body with no resistance also I feel this creates more levity and freedom to live in the now!
Thanks again for spurring such an important discussion.
Blessings,
Judith
Exploring how we want to live our final months and days empowers us to achieve quality of life at the end of life. Even more importantly, by exploring these questions, we are better able to understand how we want to live now.
Thank you for this article.
Karen Whitley Bell, RN, CHPN; Author of Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions
www.LivingAtTheEndOfLife.com
His passing helped me to formulate my ideas about what happens at death. It also helped my daughters, and our spiritual lives are abundant because of it. I wish that our culture embraced the end of life as the profound event that it really is for us. I believe that it would inform the way we live, in many ways.
Also, as the owner of an online memorial art company called Shine On Brightly, at www.shineonbrightly.com, I am committed to the importance of honoring life, especially through art. If we create or find something meaningful to help us remember our loved ones, it is very different than buying a mass-produced object. We, as a society, can find so much meaning and healing in death if we are not afraid. The more we engage in a loved one's transition, through choices like hospice, and open-ness about what is happening at the time of death, the richer our lives will be for it.
Blessings,
Judith
thanks again for writing...Chris
widowisland.wordpress.com
Blessings,
Judith
http://blog.soul-therapy.com/2010/05/i-am-just-human-being.html
http://www.facebook.com/pages/Soul-Therapy/278635488830
http://www.soul-therapy.com/
The group that received palliative care actually survived significantly longer than the standard care group. This study is groundbreaking; likely to dispel many myths and reaffirms what many of us in the field of end-of-life care already know: that "life-prolonging" therapy can actually be more harmful at the end of life, and emphasizing quality of life has benefits just beyond "comfort" - it actually improves survival.
http://www.nejm.org/doi/full/10.1056/NEJMoa1000678
Blessings,
Judith
It is NURSES who mostly carry out the orders and hands-on duties of any hospice patient/family's experiences at home while the patient is both heading towards/then actively dying, and it is nurse practitioners, like myself, who manage every aspect of the provision of managing patients care on hospice, from prescribing medications to managing acute episodic needs of all sorts.
. . .[The system perpetuates the] myth of the almighty doctor as the overseer or most important member of the hospice team/dying process of patients, when, again, it is nurses and nurse practitioners who are MOST often those who are actually managing any given patient's care. Of course, the "doctor" serves as the director of the hospice company/team, making many thousands of dollars/month, in many cases, to merely accept a call here or there and either reinforce decisions already made or make decisions about care, albeit from a distance. This convenient and lucrative economic set-up for physicians also exists in nursing homes, where a physician only, is chosen to be director of the nursing home, although he/she is often very difficult to reach, rarely visits the nursing home and otherwise contributes little but his/her name, collecting many thousands of dollars/month to fulfill this role…
Thank you, FC
Ms. Johnson:
We enjoyed reading your 8/9 commentary at the Huffington Post dealing with end-of-life preparation. You’re exactly right that it’s often a taboo topic, one difficult to broach with family and others.
You may be interested to know about Five Wishes, which is an advance directive/durable power of attorney for health care. Five Wishes is easy to understand and use and was created by Aging with Dignity, a national non-profit organization. Five Wishes, “the living will with a heart and soul,†deals with the medical and legal, but also with the personal, spiritual and family issues people say matter most. It meets the legal requirements of 42 states and is used and useful in all 50 because it also helps structure the conversation that leads to completion.
With 14 million copies in national circulation, Five Wishes is the closest thing there is in America to a national living will. You may wish to visit our website, www.agingwithdignity.org, to learn more.
Sincerely,
Paul Malley
President
Aging with Dignity
www.agingwithdignity.org
Phone: (850) 681-2010 ext. 107
P.O. Box 1661, Tallahassee, FL 32302
Five Wishes is Available in 26 Languages
Books & More From Judith Johnson
8/19/10
I have been a companion to the dying for 25 years. We are making death harder rather than better because we refuse to face it as an inevitable reality that is a sacrament in the same way that birth is.
Yes, most of us die in institutions after being sick and dying for months, sometimes years. Most of us die alone, afraid and in pain. Most die over-treated, tethered to machines, experiencing a horrid death because we have not talked about dying.
What are we afraid of? That we might die well? That our families will have no mess to clean up? That our loved ones won’t grieve if we make it easy on them to let go of us?
We have to better. Let’s start the conversations with Judith’s list of questions.
Loretta Downs
www.endoflifeinspirations.com
I was diagnosed with breast cancer five years ago (at 45 years of age) and the idea of dying moved from the abstract into the realm of distinct possibility. I was deeply afraid, and went through depression. But I didn't turn away from thinking about death, reading about it, and talking to others about it.
As a result, I feel so much more liberated and at peace. Dealing with the issue of death is never easy. But just dealing with it is a huge and positive step.
http://graciouslivingdaybyday.com/
Blessings,
Judith
Blessings,
Judith
With love to you,
Anne