End-of-Life Choice, Palliative Care and Counseling

Health Care Reform

Doctors Are Practicing Irrational Medicine at the End of Life

By Monica Williams-Murphy, MD
September 22, 2012

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.’” More

Uninformed Consent, Unshared Decision-Making in the ICU

By Barbara Coombs Lee

Imagine yourself the son or daughter of a grievously ill octogenarian. Your mom or dad suffered a catastrophic event and has been in an ICU, barely conscious, for two weeks. You understand organs are shutting down, but you struggle to understand the medical jargon or the purpose of tubes and machines attached to every orifice. You and your family have kept a steadfast vigil at the hospital, and today the doctors called a meeting to talk with the family.

The family is desperate to understand what is happening and learn what lies ahead. The doctor needs the family to authorize a treatment plan. Will you learn how close your loved one is to death? Will the doctor learn their end-of-life wishes? Are there options and difficult decisions to be made? The legal standard for these conversations is that the family consents to treatment after being fully informed of alternatives, risks and benefits of each. The medical standard is that critical treatment decisions are not unilateral, but shared by the patient or surrogate and the doctor.

Sadly, informed consent and shared decision-making, the twin pillars of patient-centered healthcare, aren’t the rock-solid structures we would hope for. They are subtle, fragile fragments, often half-buried and overlooked in a heap of technological rubble. It’s a doctor’s job to dig them up and erect them, and many are not so inclined. That’s the lesson of a new study in the Journal of Intensive Care Medicine.

It is well established that many dying patients endure excesses of torturous treatment in the intensive care units of America. Tubes, machines and other contrivances can take over in clear violation of previously expressed wishes. Advance directives declining such treatments routinely get ignored. Three years ago I blogged about a bloated and misguided medical-industrial complex that tortures patients, and called it a national tragedy. I’m sorry to report not much has changed since then. More

Time Magazine’s Cover Story on End-of-Life Care

“How to Die” reads the cover of the June 11th issue of Time Magazine. Joe Klein writes about his parents’ approaching the end of life, and about the dramatic improvement in their care when they transitioned to a facility without incentives for unnecessary interventions.

The full story will soon (or immediately, for subscribers) be available online, and at newsstands later this week. Watch Joe Klein’s discussion now at Time.com.

Putting Patients First

Patient care and healthcare should be synonymous — right?

At Compassion & Choices, we believe that healthcare should be all about patient care, especially at the end of life. But too often, policy debates on care at life’s end focus on everything but the patient.

How is it possible to leave patients behind?

Just look at the healthcare insurance reform debate. Right now, as administrators in Washington, D.C., hammer out the new law’s implementation details, insurance industry executives and lobbyists push to make sure their interests come first. That’s why Congress focuses so much attention on who gets reimbursed for what and how, which federal agency oversees which part of the act, and what each section of the bill means for the industry.

Few people and organizations ask, “How can we make sure patients get what they want and need?” And even fewer advocates work to make sure that patients’ wishes are honored at the end of life.

Time and again, we see the focus shift from patients to process when care at the end of life is legislated and regulated.

Watch this short video to see what I mean. It’s from “Living Well at the End of Life,” a National Journal panel discussion I recently joined in Washington.

Compassion & Choices has renewed its commitment to work for healthcare policy that is centered on patients, not process. I’m thrilled to announce that we now have a Washington, D.C., policy office to amplify our voices in the Capital — the voices of our supporters, patients and families.

Staff in our new Washington office will track legislation as it develops and educate Congress and regulators about end-of-life issues. Our priorities will be front and center during the debates that matter most. And we’ll make sure that patients aren’t forgotten when legislators discuss healthcare at the end of life.

This is a major step forward for Compassion & Choices and our movement. The debate over our issues will never be the same and I am very excited about this milestone.

Harris Poll Shows Need for Policies Supporting End-of-Life Choice

PORTLAND, OR – Compassion & Choices, the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life, today reacted to a new Harris Poll on end-of-life issues. The poll shows overwhelming support for autonomy at the end of life and for patient-centered consultation with physicians.

The poll shows more than two-thirds (70%) of adults agree terminally ill patients should be able to choose aid in dying. Two-thirds (67%) think doctors should consult with their terminally ill patients who want information on all possible options in end-of-life care, from aggressive treatment to comfort care alone.

“Once again the American people are ahead of politicians, who are unwilling or unable to adopt public policies to support the choices their constituents want,” said Barbara Coombs Lee, president of Compassion & Choices. “Socially conservative politicians across the country continue to ignore the overwhelming public support for aid in dying. One Montana legislator wants to nullify that state’s own Supreme Court, which recognized the right to physician aid in dying in 2009. We see a federal unwillingness to compensate doctors for consultation on their patients’ treatment desires. Fortunately, signs of hope appear in the patient-centered consultation bills recently passed in California and New York.”

People who want information on advance care planning, or who are facing a terminal illness, can get information from Compassion & Choices at www.compassionandchoices.org/g2g, or by calling 1 800 247 7421.

“The vast majority of Americans want to know about their end-of-life choices,” says Coombs Lee, “and they want aid in dying to be among those choices. It’s time politicians caught up with the people. Aid in dying should be an optional component of standard end-of-life practice throughout the nation. Patient-centered consultation with physicians should be the norm.”