Living With Endometriosis

  • Home
  • [About]
  • [What Is Endometriosis?]
  • [Support]
  • [Endo Organisations]
  • “…but have you tried…”
  • About Me
  • Alternative Medicine
  • Applying for Disability
  • Be Aware
  • Endometriosis and Menopause
  • Fallen Endo Siblings – A Memorial Page
  • Filing for Medicare health benefits
  • Filing for Social Security Disability Insurance (SSDI)
  • Hormonal Suppression
  • In The News – Pharmaceuticals Can Be Dangerous
  • Is Endometriosis A Cancer?
  • Job Discrimination
  • March is National Endometriosis Awareness Month
  • Myths About Endometriosis
  • Old Wives’ Tales
  • Online Support For Endometriosis
  • Organisations
  • Our Life In Comics
  • Pain Medication
  • Pharmaceutically-run Marketing Websites
  • Public Service Announcement
  • Research and Medical Journals
  • Surgery
  • We Are Not Seekers
  • What I Should Have Said
  • What Is Endometriosis?
  • YouTube – Endometriosis Video Blogs

7

Dec

Interesting read on treatments doctors do not seek for themselves

Posted by steph 

While reading this article, put it in the context of managing endometriosis. Many of us have had repeat surgeries, only to still be in debilitating pain.

Our illness is likened to cancer, except that it doesn’t (usually) kill us. The very fact that our illness is compared to and staged like cancer is enough for one to read the article below and nod knowingly; we do not want to continue to be lab rats.

We only want to be made as comfortable as possible while dealing with the unbearable pain. We only want to live as full and joyful a life as possible in spite of the pain. Every moment the pain level takes a dip, we want to use that moment to its fullest. This is not so different than a terminal patient, in my opinion.

How Doctors Die
It’s Not Like the Rest of Us, But It Should Be
by Ken Murray

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Published in Doctors, Featured

Related Articles

  • Nearly 1 in 5 women who undergo hysterectomy may not need the procedure (March 12th, 2015)
  • Some Women Go To Great Lengths For Relief From Debilitating Monthly Cramps (March 6th, 2015)
  • Lack of endometriosis specialist increases chance of extra surgery (December 8th, 2014)
  • Canadian women not taken seriously when asking for laparoscopy to help manage pain of endometriosis (March 6th, 2012)
  • Unbelievable doctors in the 21st century (March 23rd, 2011)

No user responded in this post

Subscribe to this post comment rss or trackback url

Search

Don't Have Endo? Please Read!

  • The Letter From Survivors

  • Public Service Announcement!

  • We Are Not Seekers

  • What I Should Have Said

  • "...but have you tried..."

  • Sick Humor: The top ten worst
    suggestions commonly given to
    someone with a chronic illness


  • Our Life In Comics

Important Pages

  • Endopaedia

  • Research and Medical Journals

  • Myths about Endometriosis

  • YouTube Video Blogs

  • Applying For Disability

  • Be Aware!

  • Endo and Menopause

  • Is Endo A Cancer?

  • Job Discrimination

  • Fallen Endo Siblings

Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

Organisations

  • Endometriosis Association

  • Endometriosis Research Center

  • endometriosis.org

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • World Endometriosis Society

  • EndoBlack

  • EndoQueer

  • The Endo Coalition

  • Endometriosis Foundation of America (EFA)

Symptom Tracking

  • CureTogether.com
    - Compare symptoms with people like you,
    Find treatments that work, optimize your
    health


  • PatientsLikeMe.com
    - Real-time pain mapping, monitoring,
    analysis. Community.


  • MyMonthlyCycles.com
    - free personalized tools to track, monitor,
    and manage your mo nthly menstrual cycles!

Endo Products


  • Naturally Hip
    - cloth menstrual pads

  • EndoFEMM
    - Microwavable corn-filled cloth heating
    pads. (mention you saw them here and get
    10% off your order!)


  • Endo Awareness swag
    - As found on Etsy

Blogroll

  • Antonia's Epic Endo Journey
  • Canadian Girl In Pain
  • Chances Our
  • Chronic Healing
  • Dear Thyroid
  • Endo Empowered
  • Endo Friendo
  • Endo Times
  • Endo Trauma
  • Endo Writer
  • Endometriosis: The Silent Life Sentence
  • Field Notes from an Evolutionary Psychologist
  • Foxy In The Waiting Room
  • Get Well blog
  • I Will Not Suffer In Silence
  • Lupron Journal
  • My Endometriosis Story – Lily Williams Art
  • My Journey With Endometriosis
  • My Life With Endo & Infertility
  • Pop Goes The Feasible
  • Reading List & Resources for chronic pain, including endometriosis
  • Resilience
  • Sallie Speaks
  • SansUterus
  • Surviving Endo
  • The Ins and Outs of Endo
  • Whispered Words …
  • Yellow Paper Dress

Categories

  • Administrative (12)
  • Alternative medicine (4)
  • Autoimmune (5)
  • Biographies (13)
  • Biology (15)
  • Black Endo Health (5)
  • Books (3)
  • Cancer risk (19)
  • Centers for Disease Control (1)
  • Chronic Pain (7)
  • Diet (9)
  • Doctors (7)
  • Endometriosis Awareness (148)
  • Featured (43)
  • Food and Drug Administration (6)
  • Government-involvement (9)
  • Heart risk (1)
  • Hormone Replacement Therapy (HRT) (3)
  • Hysterectomy (5)
  • Infertility (1)
  • Inspirational (3)
  • Insurance industry (3)
  • Malpractice (4)
  • Medical industry (5)
  • Menopause (1)
  • News article (105)
  • Outrageous (20)
  • Pain management (3)
  • Pharmaceuticals (13)
  • Pseudoscience (1)
  • Research (75)
  • Suicide (2)
  • Support and networking (8)
  • Tips and advice (11)
  • Trans Health (8)
  • Uncategorized (10)
December 2011
S M T W T F S
 123
45678910
11121314151617
18192021222324
25262728293031
« Nov   Jan »

Archives

  • March 2022 (9)
  • April 2021 (1)
  • March 2021 (15)
  • November 2020 (1)
  • March 2020 (2)
  • January 2020 (2)
  • March 2019 (7)
  • March 2018 (8)
  • March 2017 (12)
  • April 2016 (1)
  • March 2016 (8)
  • February 2016 (1)
  • August 2015 (1)
  • March 2015 (17)
  • December 2014 (1)
  • July 2014 (1)
  • April 2014 (2)
  • March 2014 (3)
  • May 2013 (1)
  • March 2013 (31)
  • July 2012 (1)
  • April 2012 (2)
  • March 2012 (9)
  • February 2012 (5)
  • January 2012 (2)
  • December 2011 (1)
  • November 2011 (1)
  • August 2011 (1)
  • July 2011 (1)
  • March 2011 (3)
  • January 2011 (5)
  • December 2010 (3)
  • November 2010 (1)
  • October 2010 (1)
  • September 2010 (2)
  • August 2010 (2)
  • July 2010 (2)
  • May 2010 (1)
  • April 2010 (8)
  • March 2010 (4)
  • February 2010 (10)
  • January 2010 (2)
  • December 2009 (1)
  • November 2009 (4)
  • October 2009 (2)
  • September 2009 (3)
  • August 2009 (4)
  • June 2009 (2)
  • April 2009 (2)
  • March 2009 (38)
  • February 2009 (9)
  • January 2009 (15)
  • December 2008 (12)
  • November 2008 (8)
  • January 2008 (1)

Syndication

  • Add blog to any reader

  • Comments RSS

Recent Post

  • Trans, gender-diverse people with endometriosis fight ‘double battle’ against pain and lack of recognition
  • Transgender People with Endometriosis Often Suffer in Silence
  • Font issues with the website
  • France formally recognises endometriosis as ‘long-term condition’
  • Worldwide Endometriosis March
  • 10 Research-Backed Truths About Endometriosis
  • Endometriosis patients suffering extreme pain due to pandemic treatment delays and lack of expertise
  • Endometriosis pain and epithelial neutrophil activating peptide-78 levels
  • Honouring Henrietta Lacks
  • Vaccine / menstruation study

Recent Comments

  • admin in Honouring Henrietta Lacks
  • Kathy in A Breakthrough In A Disease That No One Likes To T…
  • Jenn in Unbelievable doctors in the 21st century
  • admin in Peggy Santa Maria - a saint to endo sisters!
  • That Girl with Endo in Peggy Santa Maria - a saint to endo sisters!
  • I Will Not Suffer In Silence »… in Peggy Santa Maria - a saint to endo sisters!
  • That Girl with Endo in Peggy Santa Maria - a saint to endo sisters!
  • steph in Peggy Santa Maria - a saint to endo sisters!
  • JennM in Peggy Santa Maria - a saint to endo sisters!
  • I Will Not Suffer In Silence »… in Genetic variants on chromosome 1 and 7 more likely…
© 2008 Living With Endometriosis is proudly powered by WordPress
Designed by Roam2Rome