Today, two items regarding end-of-life and having a conversation about one’s own mortality. Medical directives are imperative to ensure living and dying the way you want. The following chat and op-ed give you lots of food for thought.
For more than a year now, Los Angeles Times columnist Steve Lopez has been writing and talking about how we die. On Thursday, he hosted a Google+ Hangout with Dr. Judy Epstein, clinical director of the Compassion & Choices organization’s End-of-Life Consultation Program, and Kathryn Tucker, director of legal affairs for Compassion & Choices, which advocates for patients’ rights on end-of-life issues. Here’s the video of the chat:
Here’s an op-ed column that appeared in today’sAlbuquerque Journal. It was written by Dr. Aroop Mangalik, Professor Emeritus of Medicine at UNM School of Medicine. The paper titled it “Take Control of Life, Death.”
If you want to be comfortable, happy and be with your family and friends when you are facing a serious illness or are likely to die in the near future, you need to take control.
In recent decades, there has been what some have called “medicalization of death.” There have been many advances in medicine and a lot of people are living healthier, longer lives.
But ultimately, we all have to die.
Medicalization of death has occurred, to a significant degree, because we – society, patients and doctors – have not taken into account the fact that there are limits to life and that medical interventions can only do so much.
Understanding this reality is a major step that must be taken to get the best outcome for the patient.
How does one understand this? How do we take control of the situation?
The knowledge you need to get will necessarily come from your medical provider. The best decisions are made by having the facts – available treatment options and the likely outcomes.
Ask your provider about the nature of the illness and what is expected without any treatment.
The next steps will be to get a clear picture of what treatments are available. You should be able to get some idea of how likely it is that the treatments will improve the outcome for you.
This includes information on previous success and failures with available options. At least try to find out if the treatment is “very likely,” “likely,” or “not likely” to help.
Equally, important, you need to know what will be the side-effects of treatment. Will the treatments be harsh or mild, will they last for a short time or will they be persistent.
The cost in dollars is also something that must be considered. In this day of uncertainty we cannot ignore that factor. Many families face bankruptcy because of “long shot” medical treatments.
Once you have the information, you need to decide. It should be your decision based on the best information and input you can get.
If you feel that the treatments available to you are not going to help you achieve your goals, you can refuse those treatments. No one can force you to have a treatment you do not want.
If you choose the path of not taking the treatment, the focus changes from controlling the disease to making your life as comfortable as possible.
The medical team will work with you to control your symptoms. They will help you with pain control, nausea, vomiting, shortness of breath or difficulties in performing day-to-day activities. They will work with you to get the best out of life for whatever time you are alive.
There are many types of experts who are trained to help you. They have overlapping roles and expertise and they work together.
They are referred to as Palliative Care Specialists, Hospice Teams or Symptom Management experts. They all have the goals of making your life better and focus on you.
They also help you and your family so that you die comfortably and with dignity with your family and friends around you.
In certain circumstances, despite their efforts, living may feel like a burden. There are other options that can be utilized.
This is the option of you willfully ending your life at the time you choose. This option has been given a number of names. Physician-assisted death (and) assisted suicide being two common ones.
The option is currently available in Oregon and Washington State. In New Mexico, we are waiting for the courts to decide if such an action would be legal.
In summary, when faced with a serious illness, you should take control of your life and decide what is best for you.
This column is written on Dr. Aroop Mangalik’s personal capacity and is not reflective of the UNM Health Sciences Center.
A number of columns and articles on how doctors approach end-of-life care for themselves have appeared recently. Patients, take note: doctors choose quality of life over quantity of time almost every time. Do you have advance medical directives in place?
A column by Ken Murray that appeared in The Wall Street Journal and was excerpted in The Week‘s March 9 issue said:
Most doctors die differently than their patients. When our time comes, those of us who’ve spent our lives in the health-care system tend to decline aggressive treatment to save our lives…
Having seen so many people die, doctors know that “heroic measures” to prolong life often succeed only in providing a few extra weeks or months of suffering and indignity.
Unfortunately, most people would rather not think about death, so only 20 percent have written living wills that give them “control over how their lives end.” That’s a pity; the time to think about this is now. Like most doctors, I have made it clear that when my time comes, “I will go gently into that good night.”
On Forbes.com, physician and financial planner Carolyn McClanahan just posted a piece, How to Die Like a Doctor. Here’s the intro:
With the interest lately in how doctors die, now is a great time to help you plan to die like a doctor. In my last post, I discussed how doctors are great at completing their end of life planning, and they make certain the right people are in place to carry out their wishes. They also tend to take charge of making certain their loved ones have the most pleasant end of life possible.
When doctors choose how to treat their terminal illness, they take prognosis into account. If prognosis is not good, most opt for comfort care and conservative treatment. Ideally, a death well prepared for is a more comfortable death, and this is what doctors choose. So what can you do to die like a doctor? It takes some preparation, and for most, a change in how life and death are viewed. I’ll break this down into phases – pre-illness, illness, and too-late-to-cure illness. This is a lot to cover, so it will take a few posts.
Check out her posts – there’s a lot of great information she provides and timely tips.
And USA Today just ran a story yesterday titled “Best Care” may be dying well say hospice, palliative care docs. Medical advances help people live longer and longer, but too few physicians help people understand that longer is not always better, according to two new books.
The books are The Best Care Possible, a Physician’s Quest to Transform Care Through the End Of Life by Ira Byock and What Really Matters, 7 Lessons for Living from the Stories of the Dying by Karen Wyatt.
Byock says the needless suffering at the end of life is partly a result of a current political climate that accuses palliative care doctors and hospice physicians of promoting a “culture of death” or “death panels.” Rather, he writes, he is one of the compassionate experts who are “pro-life” and insist people get the best care possible — basically what they want for themselves — and no extra care.
“Most doctors have been trained to treat diseases and not deal with end-of-life issues,” he says. “American medical prowess is wonderful, but we have yet to make a person immortal. At some point, more disease treatment is not better care.”
People have to think about quality of life but also quality of death, he says, adding that it’s important that doctors don’t give up too soon on someone while also knowing the limitations of treatment.
“I think physicians have really fallen short on that obligation,” says Wyatt. “They haven’t been as helpful to patients as they could have been.”
So if doctors plan ahead and seek a peaceful passing, why don’t their patients? Everyone wants to go to heaven but no one wants to die to get there. Time to have some serious conversations, folks.
MoneyWatch reporter Steve Vernon just did a story titled “Five hidden retirement trends of 2011.” He reported on some important emerging trends that might not have made the headlines, but they still require your attention in the months and years to come. One of them involves end-of-life issues. They include:
1. New products and services to generate retirement income
2. The Department of Labor issues regulations on expert advice in 401(k) plans
3. High unemployment and the consequence of boomers working longer
4. Many more children in poverty than the number of retirees
And this was the trend that I find most of interest:
5. More and more people looking for a “good death”
While most of my writing focuses on helping people live long and prosper during our retirement years, we can’t escape the inevitable conclusion to our life’s journey. Discussing end-of-life issues is tricky in America. Witness the demonization of hospice counseling as “pulling the plug on grandma” during the recent debate on health-care reform. But this topic was the subject of an excellent and tactful article in Contingencies, an actuarial journal that admittedly doesn’t generate headline news.
The article notes that families who take advantage of Medicare’s end-of-life counseling report outcomes that are more satisfying emotionally for all concerned — the patient, family and friends, and health-care professionals. This counseling often results in saving money by forgoing desperate yet expensive life-extending measures, although saving money certainly isn’t the goal of these services.
Boomers will receive a preview of coming attractions as they help their parents transition. My father moved from the hospital into hospice care after counseling from his doctor, and our entire family was very grateful for this decision. Boomers will probably redefine how we finish our lives, just as we’ve redefined all stages of life throughout the decades.
Lessons learned: If you haven’t already done so, adopt a medical directive that spells out the treatment you’d prefer as the end draws near. The people you care about most — your spouse, children and close friends — will be comforted by knowing your wishes.
The trends reported here are some of the tougher issues we collectively face, as our nation navigates uncharted waters with the aging of the baby boomer generation. The best way to meet these challenges is to face them head-on, so kick these ideas around with work colleagues, family and friends. We’ll figure it out together!
Technology is updating end-of-life. From QR (quick response) codes on grave markers to a medical directives application for the iPad, it’s amazing what’s taking place at the end of the line.
QR (quick response) codes are two-dimensional bar codes that were created in 1994 by Toyota subsidiary Denso-Wave to track car parts through the manufacturing process. Now with the rise in smartphone usage, there are apps that allow you to use your smartphone’s camera as a bar code reader.
With the advances in QR code integration you can use your smartphone to scan the QR code which will direct you to a specific website, or in the case of the funeral industry to an online obituary or memorial.
Yesterday’s USA Today featured an article about QR technology being used in various ways – including on headstones that give details about the deceased associated with that grave marker.
In Seattle, Quiring Monuments has made code-adorned “living headstones” for about two months. It has sold about 30 so far, General Manager Jon Reece said, adding he’s gotten “tons” of inquiries, often from people still very much alive: “They say, ‘I want my story to be told the way I want it to be told.’”
Quiring Monuments offers the QR code, website and website hosting free to people buying new monuments from the company, Reece said, noting the company will add it to existing grave markers for $65.
There’s an app for that!
The Santa Cruz Sentinel recently ran a story titled “How to start the toughest conversation of all” It’s about a local doctor who created a living will app for the iPad. The article by Jondi Gumz, starts:
Click photo to enlarge
Kathy Corby’s living will app is shown on an iPad.
SANTA CRUZ – When Kathy Corby reaches her last days, she knows how she wants to go.”I want my full-fat latte and a box of chocolates,” she said. “Just because it’s the last part of your life, it doesn’t have to be the worst part.”
Corby, 61, is planning ahead for when that time comes. She wants her family to know what kind of treatment and care she prefers.
“If you don’t tell people what you want, it won’t happen,” said Corby. “It’s hard to begin the conversation, but for me, it’s not.”
She speaks as a family physician with 15 years of experience in emergency medicine.
She has seen people arrive in the emergency room in critical condition, unable to speak for themselves. She’s cared for people with dementia who no longer recognize loved ones.
Doctors do everything possible to keep their patients alive. That could mean a respirator to help the patient breathe, an array of medications, treatments with a 5 to 10 percent chance of success, anything in today’s medical toolbox.
“The default is everything,” said Corby. “Much of it is so futile.”
She recalls with regret a situation in the first year of her medical career. A patient was admitted to the hospital late at night.
“I’m sorry I didn’t ask him what he would have wanted,” she said. “Nobody knew if they were doing the right thing. I’ve seen people struggle with this so often. These decisions have to be talked about.”
What does it mean to be a human being, as opposed to simply being alive? What does it mean to be dead? When do we stop being human?
Albuquerque’s Congregation Albert members wrestled with these questions in a recent text study session with Rabbi Harry Rosenfeld, the synagogue’s new rabbi.
Rosenfeld has counseled congregants throughout his 30-year rabbinical career regarding life and death medical procedures. He said there are two levels to consider – what the doctors tell us to do procedurally and what Jewish tradition tells us about human values. The challenge is to incorporate those values within the medical decision-making process.
The article, “Religion and the Robot,” written in 1966 by Azriel Rosenfeld (no relation to Rabbi Rosenfeld) in Tradition: A Journal of Orthodox Thought, suggested three criteria for the religious definition of a human: human parentage, human form, and intelligence. Yet, Rosenfeld raises other questions:
How much of a person’s body can be replaced by artificial limbs and organs before he is no longer a “man”?
Is he a “man” as long as his brain remains intact?
What if his brain too is “replaced” by a complete recoding of its contents in the “memory banks” of an “intelligent” computer? (theoretical in 1966, getting closer to reality in 2011)
If dolphins are as intelligent as humans, does this make a dolphin a “man”?
The mythical golem in Jewish tradition was an animated creature of clay or wood created to be a servant or protector. It was known for strength but not brains. The Rabbi said that the golem is like a fetus, in that it doesn’t have the breath of life. It is a being, but not quite a human being.
Being human, we have to be able to communicate. We have breath cycling in and out of our lungs and blood flowing in our veins. And men and women are made in the image of God.
So, in the dying process, is there a point at which we stop being human and become a golem? If someone is in a persistent vegetative state, do we keep him alive with machines and tubes just because we can?
Jewish ethical guidelines for medical intervention suggest this: If a human being needs help doing something to continue living, provide it. Is the issue breathing or a feeding tube, medication or circulation? When it’s a case of the human body naturally dying, let it happen. We are charged to treasure life, but also to avoid prolonging death. The ultimate decision comes down to love.
Family members have to make decisions for an ailing loved one based on love. If Grandma says she wants to be allowed to die, family members should support her decision. Those who want to keep her alive despite her wishes may be more concerned about their own emotional distress in this situation.
Families often don’t have conversations about healthcare advance directives, and frequently when it is discussed, there’s disagreement. Have a conversation before there’s a health crisis and a family member becomes an uncommunicative golem.
At the end of the session, a group of congregants did a reading from the play R.U.R. by Karel Capek. R.U.R. stands for Rossum’s Universal Robots, androids that can be mistaken for humans and think for themselves. This Czech science fiction play debuted in 1921 and introduced the word “robot” to the English language and science fiction as a whole. After finishing the manuscript, Capek realized he had created a modern version of the Jewish golem legend.
R.U.R. ends with this lovely passage:
“Life begins anew, it begins naked and small and comes from love; it takes root in the desert and all that we have done and built, all our cities and factories, all our great art, all our thoughts and all our philosophies, all this will not pass away. It’s only we that have passed away. Our buildings and machines will fall to ruin, the systems and the names of the great will fall like leaves, but you, love, you flourish in the ruins, sow the seeds of life in the wind. Lord, now lettest Thou Thy servant depart in peace, for mine eyes… for mine eyes have seen Thy salvation… seen salvation through love – and life.”
So what makes us, and keeps us, human? Love is the answer.
CBS News recently ran a story about videos that detail end-of-life treatment options and give patients real-world examples to better inform their choices. These videos provide an eye-opening look at what really happens when your medical directives say “Do everything in your power to save me.”
25 percent of all Medicare spending, more than 100 billion dollars, is spent in the last year of life. Every year, patients are getting expensive, aggressive treatments that don’t save lives, and may actually prolong misery.
The videos come from the Nous Foundation, Inc. and Advanced Care Planning Decisions. The non-profit organization consists of a group of clinicians and researchers who want to empower patients with video decision aids. Their video support tools are carefully crafted after undergoing rigorous review by leading experts in medicine, geriatrics, oncology, palliative care, ethics, and decision-making.
Video decision aids effectively communicate and inform patients about their options at the end of life. ACP Decisions Patient Education Videos help patients make informed decisions with a series of narrative videos designed to educate patients about advance care planning and end-of-life care options.
This patient-centered supplemental tool reinforces information introduced by the clinician. The videos empower patients and their families to make informed decisions consistent with their values. They give insights into what really happens in the final days of an illness.
And what patients are seeing is giving them pause about resuscitation and intubation (being put on a ventilator for breathing).
The videos are making treatment options more real and less abstract for patients. Studies show that most patients who watch these videos change their minds about what they want and choose less aggressive care.
Palliative care, designed to make the patient comfortable in their final days, is so much more humane than inflicting treatments that only extend pain. I hope everyone who faces a terminal diagnosis (something we are all headed for at some point) has a chance to see these videos.
After all, as Wayne Dyer said, life itself is a terminal disease.
The top story in today’s New York Times focuses on a new Medicare policy that goes into effect on January 1, 2011 to pay doctors who discuss and advise patients on options for end-of-life care. The conversation may include advance medical directives from the patient as to whether they may wish to forgo aggressive life-sustaining treatment.
It’s about time.
The furor over “death panels” related to end-of-life planning that erupted last year caused the Democrats to drop that element from the legislation to overhaul the health care system. But the same goal will be achieved by regulation in the New Year.
The final version of the health care legislation signed into law by President Obama in March authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.
Imagine, doctors can actually provide information to patients on how to prepare an advance directive! This is a statement by the patient of how aggressively he or she wishes to be treated if the person is so sick that he/she cannot make health care decisions for themselves. It’s a guideline for the family on what the patient wants, not a death threat.
Our family has personal experience with this. Advance medical directives can be enormously helpful to avoid confusion in the hospital in a health care crisis situation. Yet even with directives in place, there can be discord in the family over treatment. Read our family’s story here.
The Obama administration said research shows the value of end-of-life planning. From the New York Times story:
“Advance care planning improves end-of-life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives,” the administration said in the preamble to the Medicare regulation, quoting research published this year in the British Medical Journal.
The administration also cited research by Dr. Stacy M. Fischer, an assistant professor at the University of Colorado School of Medicine, who found that “end-of-life discussions between doctor and patient help ensure that one gets the care one wants.” In this sense, Dr. Fischer said, such consultations “protect patient autonomy.”
Opponents said the Obama administration was bringing back a procedure that could be used to justify the premature withdrawal of life-sustaining treatment from people with severe illnesses and disabilities.
Pretending we are going to live forever makes it that much harder when we find out that’s not going to happen. Would you prefer medical interventions, some of which might be painful, to stretch out quantity of time, but perhaps not quality of life? Or might hospice or palliative care, the relief of pain without pursuit of a cure and support for the family, be more your preference?
To start thinking about what end-of-life directives you might embrace, check out the Five Wishes from Aging With Dignity and The One Slide Project from Engage With Grace.
Just as talking about sex won’t make you pregnant, talking about end-of-life care won’t make you dead – and your family will benefit from the conversation. No matter how old you are, make a resolution to have a conversation, with your family as well as your doctor, in the New Year.
There’s a great piece on Huffington Post by Judith Johnson, life coach and author of The Wedding Ceremony Planner, titled The Importance of End-of-Life Preparation. She and I are on the same page when it comes to encouraging families to think about and talk to each other about death and putting one’s affairs in order.
Her definition of putting your affairs in order is that at a minimum, all adults need to have two legal documents: a health care proxy and a will or trust. She goes into an excellent discussion of both documents, and ends with The top five excuses and secret fears for not putting one’s affairs in order:
1. If I put my affairs in order, then I will die very soon. Not true! There is absolutely no connection. This is simply an irrational fear.
2. I’ll do it later. I’m too busy. Or, I’m young, and therefore have plenty of time. How much time you have is not in your control.
3. It is all too much. I don’t know where to start. I’m overwhelmed. Just do it! The risk involved in not having these documents is just too high!
4. It’s too creepy to deal with this stuff. It’s creepy to change a baby’s diaper, but you do it anyway!
5. It’s too expensive. I can’t afford the legal expense right now. It will be far more expensive both financially and legally for your loved ones if you don’t get this done and you forfeit the right to direct your own affairs.
New study results published online Dec. 14 in the Journal of Clinical Oncology indicates that being at peace with God is very important to people close to death.
When asked what was important to them at the end of their lives, people dying of cancer ranked two factors highest: pain control and being at peace with God, the study found.
“Medicine tends to focus on the more scientific aspects of the person, and we’ve made wonderful strides in improving patient care, but there’s another important component of patient health: spirituality,” explained Dr. Tracy Anne Balboni, a radiation oncologist at the Dana-Farber Cancer Institute in Boston and the study’s lead author. “This is clearly an area where some important advancements can be made.”
The researchers discovered that people with advanced cancer were far more likely to choose hospice care when their spiritual needs had been addressed. And among those who were very religious, meeting spiritual needs increased the odds that a terminal patient would choose to forgo aggressive, yet often unsuccessful, medical treatments, the study found.
However, at least six of 10 people with advanced cancer reported that their spiritual needs were only minimally or not at all supported.
If you missed last night’s 60 Minutes story on the cost of dying, I recommend you visit their web site to see the story and all the web extras on this page.
Steve Kroft introduced the piece saying, “Every medical study ever conducted has concluded that 100 percent of all Americans will eventually die. This comes as no great surprise, but the amount of money being spent at the very end of people’s lives probably will. Last year, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients’ lives – that’s more than the budget of the Department of Homeland Security or the Department of Education”
“And it has been estimated that 20 to 30 percent of these medical expenditures may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked. You might think this would be an obvious thing for Congress and the president to address as they try to reform health care. But what used to be a bipartisan issue has become a politically explosive one – a perfect example of the costs that threaten to bankrupt the country and how hard it’s going to be to rein them in.”
Dr. Ira Byock, who spoke at the Association for Death Education and Counseling (ADEC) conference this spring, was featured in the piece.
“Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse. Most generally, it’s having someone you love die badly,” Byock said.
Asked what he means by “die badly,” Byock told Kroft, “Dying suffering. Dying connected to machines. I mean, denial of death at some point becomes a delusion, and we start acting in ways that make no sense whatsoever. And I think that’s collectively what we’re doing.”
This is a very important story that we all need to think about.
