Wednesday, October 22, 2008

A good time for a heart-to-heart talk

I think this might be a very important piece of research. I quote portions of the abstract from a recent article in JAMA. Comments and observations, as always, are welcome.

Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment

Alexi A. Wright, MD; Baohui Zhang, MS; Alaka Ray, MD; Jennifer W. Mack, MD, MPH; Elizabeth Trice, MD, PhD; Tracy Balboni, MD, MPH; Susan L. Mitchell, MD; Vicki A. Jackson, MD, MPH; Susan D. Block, MD; Paul K. Maciejewski, PhD; Holly G. Prigerson, PhD
JAMA. 2008;300(14):1665-1673.

Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm.

To determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions.

Design, Setting, and Participants
A US multisite, prospective, longitudinal cohort study of patients with advanced cancer and their informal caregivers (n = 332dyads), September 2002-February 2008. Patients were followed up from enrollment to death, a median of 4.4 months later. Bereaved caregivers' psychiatric illness and quality of life was assessed a median of 6.5 months later.

Main Outcome Measures
Aggressive medical care (eg, ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients' mental health and caregivers' bereavement adjustment.

One hundred twenty-three of 332 (37.0%) patients reported having end-of-life discussions before baseline.... After propensity-score weighted adjustment, end-of-life discussions were associated with lower rates of ventilation... resuscitation ... ICU admission ... and earlier hospice enrollment. In adjusted analyses, more aggressive medical care was associated with worse patient quality of life ... and higher risk of major depressive disorder in bereaved caregivers ... whereas longer hospice stays were associated with better patient quality of life .... Better patient quality of life was associated with better caregiver quality of life at follow-up....

End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.


e-Patient Dave said...

I wonder how much of the difference is related to people in the study simply listening to the patient's and family's wishes, which doesn't always happen. (Could account for people being happier with the outcome!)

I was pretty upset to read the story of what happened recently with the father of Paul Grundy MD, head of PCPCC. I wrote about his story, and linked to it, here. Long story short, "He had services worth hundreds of thousands of dollars given to him he did not want — even had a directive against."

Grundy says in his experience this happens well over 50% of the time. His father received a pacemaker despite having a directive not to do so, but nobody contacted his primary doctor nor even his wife.

Sorry, I'm more than a little annoyed at JAMA in general today, in no small part because of the article described here, in which they seem to show not the slightest comprehension of what it's like to need a doctor who really knows what they're doing!

Fortunately BIDMC isn't like that. But I'm starting to think somebody high up in the AMA needs what author Roger Och called A Whack on the Side of the Head - right on the listening lobe!

--EPD, feeling grumpier than usual tonight

Anonymous said...

I'm working on a REAL LIFE statement for patients about the REAL LIFE issues around death. Most of us will never have to make the big drama "pull the plug" decision. Quality of life is about a thousand small things --like if I am nearing death and I get pneumonia, my preference is that you give me oxygen and morphine but no anti-biotics. If I have to go to a nursing home, please don't park me in front of the TV.

I plan to work it up into a web page questionnaire that people can fill out, give to family, friends, doctors, nurses, etc. Living wills don't really cover any of the thousand medical decisions that are really important in quality of life.

Anonymous said...

Ironically, a friend just talked to me about her loved one's hospital care and lack of "the conversation" with her providers. She is no longer in remission and just completed her 3rd surgery. She will remain in the facility, she was told, for at least a month for chemo and monitoring and then will be transferred a long distance to a Boston hospital (not BIDMC) for "experimental" treatment which we don't believe was relayed, either. Why? Why isn't she being talked with honestly? Giving hope is one thing but facing reality is another.

I understand the need to fight the good fight but this is over the top and it's being promoted by her physicians who seem to have some type of monetary connection to this Boston hospital. They are practicing seemingly unethical, immoral practices which should be looked into further at both facilities. Is this a money making unspoken deal at the patient's expense? This excessive treatment does not focus on the quality of life for the patient and family as it should. Or, is it lack of courage by the physician to say that we don't know enough about this? How much insurance can this patient possibly have to cover this extensive hospital stay? Wouldn't remaining in the comfort of one's home or traveling be a much more peaceful exit if it was a month of life with no chemo or surgeries or transplants with your loved one's by your side? The memories would be much more pleasant for those left behind.

Bart Windrum, author/speaker said...

It's refreshing to see "the system" finally look into EOL matters. As always, it's also fascinating to see the language and quantification with which it attends to this issue.

I'm no apologist for curative orientation and treatment past the point of persons being fixable (dying from advanced chronic fatal conditions, as per Joanne Lynn). However, unless and until we as a society begin talking about issues like the true nature of hospitalizations (especially in the EOL context), the partial futility, under current conditions, of what's called advance planning, and how to actually, really manifest the resolve to die in peace, kudo's to these overworked providers for taking on the issue alone.

The finger of responsibility points 360 degrees; citizens are part of the system. Citizens who keep showing up at hospitals saying "fix me, fix her, fix him" well past the point that anyone's fixable. Shame on medicine for failing to really provide for us at that stage (and especially for misleading us generally and continuing to do so after we've entered the crucible -- and I'm talking about both in the moment as per the JAMA study and at the higher, continuous, meta-level).

What's needed is a national citizen conversation (plus a paradigmatic Medicare hospice eligibility change from the legal standard "beyond a shadow of a doubt" to one of "by a preponderance of the evidence" -- dying from the disease(s) distinct from living with the disease(s), to utilize Pauline Chen's writing. All of which would provide the critical missing element: lead-time for patient-families who've been made aware of their impending demise (where "impending", by a softer benchmark, means "up to some years") with enough time to come to grips with it, and then to ask for, and receive, appropriate *care*.

Bart Windrum, author/speaker:
- Notes from the Waiting Room: Managing a Loved One's End of Life Hospitalization
- The Option to Die in PEACE (Patient Ethical Alternative Care Elective)

Bart Windrum, author/speaker said...

I'd like to add another thought: what constitutes psychological harm. The assumption from the excerpt Paul offered suggests that broaching the topic of death in a context where it realistically belongs equates to or inflicts harm. My experiences tell me that it's as likely that failing to broach the topic induces harm (as in lost opportunities to commune with a dying loved one and to receive treatment direction from a dying loved one (to preclude POAs from having to make a pull-the-plug decision they never dreamt they'd have to make). In short, to protect precious moments. Additionally, I'll suggest that failing to communicate fully about obvious (to providers, that is) potential prognoses equates to true abandonment.

So, why is it that clear, truthful communication is thought to project harm, and that that harm is more harmful than the harm induced by failure to communicate? Let's study that!

I say this with full sobriety and compassion for providers; I would not want to place myself in a position to be accused of abandonment -- and I believe I know something about this: during my mom's demise my Dad asked, about 1 week in, if I would abandon curative efforts (she was suddenly intubated and remained so, essentially comatose, for the next 2.5 wks until extubation proved she was not viable)..."she's still in there" he said. Both my NICU nurse sister and I, who together agreed that if we were POAs we'd end things, lied to our father and said no, it's too soon. In hindsight, I heavily regret that. But, boy, I didn't want Dad to think I was abandoning her (or him).

Now, if we can convince Dr. Quill to stop using words like "paradoxical" when discussing these matters with his peers, we'd advance the conversation a little further :).