We have had great success in this year’s legislative session in Connecticut with the introduction of “An Act Concerning Compassionate Aid in Dying for the Terminally Ill“.

The next step is a public hearing, where we all must make our voices heard. That hearing will take place:

Wednesday, March 20, 2013 10:30 a.m.
Legislative Office Building — Room 1D
300 Capitol Avenue, Hartford

The proposed Connecticut law is similar to laws passed in Oregon and Washington state. It offers dignity at the end of life and gives terminally ill patients in great pain the choice to ease and end their suffering. The law includes key safeguards: The patient must have six months or less to live and be deemed mentally competent.

It guarantees we — not the government — will make our own end-of-life decisions. Furthermore, as we know, “Death with Dignity” laws have worked without abuse with the same safeguards the Connecticut law would have.

BUT we still have a lot of work to do.

Right now, we want legislators to hear from Connecticut citizens like you. If you can attend the hearing, contact Tim Appleton today at tappleton@compassionandchoices.org or by calling 860.922.1988 to help send a message to legislators during the public hearing.

We know our opponents will be there, so please come show your support as well.

You can also help by following this link to contact Connecticut lawmakers. It’s quick, easy and impactful!

Aging in America Conference panel sponsored by the Compassion and Choices: “What is Patient- and Family-Centered Care and What Happens When We Fail to Prevent It?” Patient-centered care should not include unwanted medical treatment and unnecessary suffering. Yet millions of Americans with advanced illnesses or who are terminally ill:

• Suffer needlessly from undertreated pain and other agonizing symptoms;
• Undergo pointless and costly invasive tests and treatments, often in their last days and hours; and
• Have their treatment preferences or advance directives ignored or overridden by healthcare professionals and others.

Why:   

A new study published in Feb. in the Journal of the American Medical Association examining Medicare claims data found that between the years 2000 and 2009 treatment in acute care hospitals decreased while the usage of intensive care units (ICU) and healthcare transitions the last month of life increased. An accompanying Journal of American Medical Association editorial, “Changes in End-of-Life Care Over the Past Decade More Not Better,” concluded: “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.”

Who:  

Mickey MacIntyre, Chief Program Officer, Compassion & Choices (read his testimony about how unwanted medical treatment at life’s end causes needless costly suffering before the Institute of Medicine’s Committee on Transforming End-of-Life Cares);
Lynn Feinberg, MSW, Sr. Strategic Policy Advisor, AARP Public Policy Institute;
Brian Lindberg, MMHS, Exec. Dir., Consumer Coalition for Quality Health Care;
Andrew MacPherson, Director of Government Affairs at Jennings Policy Strategies Inc.

Where:

Crystal C (West Tower/Green Level), Hyatt Regency Chicago, 151 E. Wacker Dr.

When:  

Friday, March 15, 1pm-2pm CT. If you cannot attend panel but want an interview Tuesday (March 12) Wednesday (March 13), Thursday (March 14) or Friday (March 15) with Compassion & Choices Chief Program Officer Mickey MacIntyre, please contact Sean Crowley: 202-550-6524, seancrowley57@gmail.com.

How:   

If you want to attend panel, but have not registered yet for the Aging in America Conference, please contact Jutka Mándoki: jutkam@asaging.org, 312-239-4834.

One Question Can Stop End-of-Life Torture

Several weeks ago Brown University’s Dr. Joan Teno and her Dartmouth colleagues published a study on end-of-life care in the Journal of the American Medical Association. They looked at the records of almost 850,000 Medicare beneficiaries who died between 2000 – 2009, and first found good news on hospice utilization. A closer look revealed the bad news. I believe healthcare consumers could escape the intractable problem they discovered with one timely question.

First the good news: The percentage of our nation’s elders dying under hospice care doubled in ten years, from 21.6% to 42.3%. If patients close to death received more of the comfort-directed care of hospice and less of the highly invasive, painful and burdensome treatment of intensive care units (ICUs), that would be very good news indeed. Needless suffering would have diminished.

But when the investigators looked at the period immediately preceding referral to hospice, they found a picture of torture and chaos. More people than ever received intense interventions, and the median number of disruptive moves from one institution to another grew from 2.1 to 3.1. ICU stays in the last month of life increased from 24% to 29% and ventilator use also increased, from 8% to 9%. Very sick elders, just weeks from death, are still subjected to intensive and aggressive treatments. Doctors are apparently using more machines and tubes than ever, redoubling efforts to turn around a final medical crisis or forestall death.

The data indicates that when doctors finally accept the inevitable, the end is imminent. 28% of patients received the comfort and care of hospice less than four days. This is a travesty. I would categorize such a last-minute, desperate transfer of a patient to hospice services as “dumping.”  These unfortunate patients didn’t receive comfort care instead of medical tortures. They received the maximum allotment of technological interventions and then got shunted to hospice to die.

Such transfers come too late for a family to realize the enormous relief and peace of mind that comes with knowing a loved one’s comfort comes first.  It’s too late for hospice social workers to do a thorough assessment of a patient and family’s social, emotional and spiritual needs. It’s barely enough time to administer and titrate medications for maximum relief of pain, anxiety, breathlessness and other distressing symptoms.

I would venture a guess that most of the patients in this study who suffered stays in an intensive care unit immediately before transfer to hospice had advance directives. (61% of such patients do.)  I would further guess that most of those advance directives said the patient wanted to limit life-sustaining therapies like CPR, ventilators and other rescue treatments if they were terminally ill. (Most people who fill out advance directives decline interventions if they are dying)

What is going on here? Why were these dying patients treated in violation of their stated preferences and the instructions on their advance directive?

Here’s one reason: The advance directive says, essentially, “no life-sustaining treatment if I am dying.”  But left to their own habits and sensibilities, doctors define “dying” very, very narrowly. So long as some technology, futile or not, remains in Medicine’s bag of tricks, the patient is not “dying.” In this sense, doctors are like a procrastinator putting a task off until tomorrow and believing that, technically speaking, “tomorrow” never comes.

Educators and health policy gurus have spent decades and hundreds of millions trying to turn physician behavior around. This latest study reveals not only abject failure, but lost ground as well. It’s up to the people — those approaching the end of life and those who love them — to prevent medical habit from stealing a peaceful death.

We can change medical habit by applying a reasonable definition of “dying” for ourselves.  We can save ourselves from torture by getting doctors to admit when we are likely to die within 6 months with or without treatment, or are unlikely to survive a hospitalization. That admission should give force to patients’ preferences for the end of life, or to the advance directive if they cannot speak.  But it’s up to us to call the question.

I believe we must muster the courage to ask directly, “Doctor, am I dying?” “Is my mother, father, sister, spouse, or other loved one — dying?”  “Has the time of our careful planning arrived?  Shall we avoid the trap of acting as though the inevitable will never come? Because if scientific calculations say I am likely to die during this hospitalization, I would rather die at home. If the odds are intensive care offers nothing but prolonged suffering, please refer me to hospice now.”

Facing pointed questions like this, doctors will almost always tell the truth.  They are very bad at starting a serious conversation about the end of life, but they can usually participate if they know a patient or family takes end-of-life planning seriously.

Sadly, we must take it upon ourselves to avoid being one of Dr. Teno’s dismal statistics. If the end of a battle with cancer, chronic lung disease or dementia seems to be approaching, prepare yourself to ask the crucial question BEFORE a hospital admission.  Ask it in the medical office. Ask it in the emergency room. Practice asking it before you actually have to utter the words.  “Doctor, am I dying?”

I just took care of a precious little lady, Ms. King (not her real name), who reminded me that, too often, we doctors are practicing irrational medicine at the end of life. We are like cows walking mindlessly in the same paths; only because we have always done things the same way, never questioning ourselves. What I mean is that we are often too focused on using our routine pills and procedures used to address abnormal lab values or abnormal organ function, to rightly perceive what might be best for the whole person, or even what may no longer be needed. Our typical practice habits may in fact become inappropriate medical practice at life’s end.

Ms. King was a case in point: She was a 92-year-old nursing home patient on hospice for metastatic breast cancer. Ms King had been transferred to the ER for a sudden drop in blood sugar, presumably due to her oral diabetes medication. Her appetite had apparently been trailing off, as is common at the end of life, and her medication appeared to have become “too strong.” Her glucose level had been corrected by EMS during her trip from the nursing home to the Hospital, so when I came into see Ms King she was at her ‘baseline.’

I opened the door to bed 24 and a grinning little white-haired lady peered at me from over her sheet. “Hi,” she said greeting me first.

“Hi, Ms King,” I smiled back at her and picked up her hand.

She reached over with her free hand to pat me on my forearm, “You sure are a cute little doctor,” she said smiling.

I couldn’t hold back a little laughter. “Well, you sure are a cute patient too,” I smiled and winked at her.

She winked back at me.

“Wow, this is the most pleasant 90-year-old I have cared for in a while,” I thought to myself.

As we chatted it became clear to me that she had some mild dementia but had no pain or complaints at the time. She just said, “I think I had a ‘spell’” ( a “southernism” for some type of unusual and undefined episode of feeling ill or fainting); and “I’m not hungry” when I offered her food.

Leaving her room still smiling after our pleasant exchange, I went back to look at her medical record from the nursing home and two things immediately struck me:

1. She was on 20 medications, only about half of which seemed needed or appropriate to me. For instance, if someone is expected to die from cancer in the next 6 months (which is why she was on hospice care), why should that person take a cholesterol pill every day?

• Is it going to change her outcome? No.
• Will it add to her comfort? No.
• Could it possibly cause unnecessary harm? Yes.
• So, why is she on this medication? No rational reason that I can think of, other than mere habit on the part of the doctor.
  • Doctor habit: See an abnormal lab value ( i.e. elevated cholesterol) = give a pill to correct it. While this is a fine default among the rest of the population, this type of unconscious medical practice at the end of life is contributing to wasteful drain of precious and scarce Medicare and Medicaid dollars. We cows (doctors), need to depart from these types of paths. If the usual pill, practice or procedure does not have any benefit for the dying person, if the typical treatment doesn’t create comfort, or may actually harm this person, then DON’T DO IT! Get off this path!

2. She was on hospice care but her order sheet read, “Full Code.” I can never figure this one out. If you or your family member enters hospice care this means that you generally accept that your time on this earth is limited, specifically to less than 6 months or so. Thus, it is irrational to ask for chest compressions or shocks or artificial life support measures when your expected end comes. Right? Didn’t you sign up for hospice because you were wishing for a peaceful, natural death? Well, not everyone agrees with me, so I called Ms. King’s power of attorney to clarify this point, it was her son, Mr. King.

Mr King was a pleasant man who said that he was unable to come to the hospital because he himself had suffered a stroke. After I explained the full code vs Do Not Resuscitate/Allow Natural Death pathway, he said, “Oh No! she never wanted all of that life support stuff. Both of us want what you said, ‘ a natural death.’”

I was curious that he so readily had me change this order, so I asked, “Now, has any doctor or nurse ever had this conversation with you before?”

“Nobody said anything that I could understand.” Was his reply, “but I know what you are talking about.”

I rolled my eyes up and shook my head silently while holding the phone.

How many times do little ladies like Ms. King, who are clearly at the end of life, have “Full Code” orders written or carried out only because:

i) no doctor has every talked to the family, or

ii) the family simply didn’t understand the jargon of the doctor.

• How many times do little ladies like Ms King end up being “coded” with rib crushing chest compression and transported back to the ER, when all they ever wanted was a peaceful end?
• How many times are little ladies like Ms King “resuscitated” only to lie in the ICU on a breathing machine for 2 days before their hearts give out for the final time?
• Would CPR change Ms King’s outcome of death from metastatic cancer? No.
• Would a successful resuscitation ( i.e.restarting her heart despite a crushed rib cage) add to her quality of life? No
• Would artificial life support add to her comfort? No.
• Would seeing her dead body, with tubes sticking out of every orifice, give her family a sense of peaceful closure about her death? No.
• Yet we as a nation pay for these types of outcomes every day, because this scenario happens every day. I contend that this is largely the fault of us doctors, we are failing at having the right conversations in the right way. We are too busy just doing things the way we have always done them, practicing in our default pathways and patterns … and it’s not working!

We have got to start practicing conscious, rational and caring medicine at the end of life. We doctors must ask ourselves, “What medications really matter for this patient?” We must be having conversations that the patients and families can actually understand. We must be talking about how the “high tech” pathway at the end of life may actually create or prolong unnecessary suffering. We must instead focus on communicating that the “high touch,” comfort-focused pathway is most likely to give final peace to all parties- patients and families alike.

Becoming less like cows, and awakening ourselves to these changes in practice pathways will not only rescue our patients and families from needless medical interventions and suffering at the end of life, it might just help save the life of the Medicare and Medicaid systems as well … and that’s something to “Moo” about.

Major and minor themes have been identified by emergency nurses who often provide end-of-life care in the emergency department setting, according to a study published in the September issue of the Journal of Emergency Nursing.

Renea L. Beckstrand, Ph.D., R.N., of the Brigham Young University College of Nursing in Provo, Utah, and colleagues surveyed 1,000 emergency nurses for suggestions regarding how to improve EOL care in the emergency department setting. Overall, 230 nurses provided 295 suggestions for improving care. The researchers identified five major themes and four minor themes. The major themes, which were mentioned by 20 or more respondents, included allowing emergency department nurses to have more time to care for dying patients; allowing family to be present during resuscitation; and providing more comfortable patient rooms, privacy, and family grief rooms.

Minor themes, mentioned by 16 or fewer nurses, included increased ancillary service involvement; pain management and minimizing suffering; family education; and honoring patients’ desires and wishes. “Large numbers of patients die in emergency departments in the United States every year. Caring for those who are dying in emergency departments is difficult because these highly technical departments were primarily created to save lives,” the authors write. “Implementing changes based on emergency nurse recommendations may dramatically improve EOL care for dying patients and their family members.”