Unwanted Medical Treatment
Imagine
your 90-year-old mother has Alzheimer's disease and is near death. But before
she became mentally incompetent, she gave you power of attorney to sign a Do
Not Resuscitate (DNR) order so medical personnel would honor her wishes to die
peacefully, without aggressive medical interventions in her final days.
Then your worst nightmare unfolds: your mother goes into cardiac arrest, and is subjected to the very treatment she had been determined to avoid: aggressive, traumatic Cardio Pulmonary Resuscitation, and other extreme measures, including having a hole cut in her throat, being injected with paralyzing drugs, having tubes forced down her throat and into her stomach, and having air forced into her lungs.
Two
days after this aggressive, traumatic resuscitation, you are in the
indescribably horrifying situation of having to direct that your mother's
ventilator be removed so she can finally die and her suffering end.
But she
lingers on in a slow decline for another five days while you maintain a
heartbreaking, bedside vigil each day and night until she finally passes away.
Then to add insult to injury, the hospital hands you a bill for this unwanted
medical treatment totaling thousands of dollars.
Sound
preposterous? Unfortunately, it's not. It is Sharon Hallada's real life, front
page news nightmare. It prompted the leading national organization dedicated to
ensuring that medical professionals honor patients' end-of-life choices,
Compassion & Choices, to help Sharon file a lawsuit against a hospital and
a nursing home in Lakeland, Florida, for failing to honor her mother's wishes,
despite the fact that they had been clearly and legally specified in the DNR.
Sharon sued on behalf of her deceased mother, Marjorie Mangiaruca, to ensure no
else's parent has to endure this kind of traumatic experience.
In
fact, medical professionals override or ignore many patients' decisions in the
weeks and months before their deaths. It happens for a variety of reasons and
can lead to invasive and fruitless testing, needless suffering, unrelenting
pain and a prolonging of the period before death. Patients are tethered to
monitors and machines despite their determination to reject treatment and
desire to die at home in the embrace of loved ones.
A
recent study published in Journal of the American Medical Association found
that between 2000 and 2009 treatment in intensive care units in the last month
of life increased from 24 percent to 29 percent.
The accompanying editorial
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."
To
stop this disturbing trend, policy makers can and should provide both the
carrot and the stick to ensure that patients' wishes are honored: financial
incentives for honoring advance directives and financial disincentives for
disregarding patients expressed wishes.
The
Centers for Medicare and Medicaid Services (CMS) should deny payment to
providers when there is clear evidence that patients were subjected to
treatments they didn't want -- just as current policies deny payment when
patients receive unnecessary treatment.
The
Justice Department is investigating hospitals and doctors' groups for
unnecessary treatment and taking legal action against the perpetrators when
they find evidence of such treatment. The same diligence should be trained on
unwanted medical treatment. It is always unnecessary and should never be
considered acceptable.
Compassion
& Choices recently recommended CMS initiate several steps to improve the
quality of conversations among health care professionals, patients and families
about end-of-life decisions, including:
1.
Reimbursing medical providers for participation in advanced care planning with
patients and their families well in advance of illness or before facing end of life;
2.
Providing financial incentives and training to encourage medical providers to
offer all the information and counseling necessary for a patient's decision
making when they secure informed consent;
3.
Ensuring that the full range of medical care and treatment decisions, including
curative care, palliative care and medical assistance in dying, are freely
available to patients without institutional or reimbursement barriers.
The
explosion of the aging population coupled with the nation's financial and moral
commitment to providing health care to an ever-increasing number of Americans
reveals that the scourge of unwanted medical treatment must be an urgent
priority for our nation.
MacIntyre is the Chief Program Officer for the
nation's leading end-of-life choice advocacy group, Compassion & Choices.
He recently testified before the Institute of Medicine's Committee on
Transforming End-of-Life Care. Crowley is Media Relations Manager for
Compassion & Choices and a former press secretary for U.S. Rep. Sander
Levin, the ranking member of the House Appropriations Committee, which has
jurisdiction over federal health care programs.