How to Ensure People Get End-of-Life Healthcare They Want
By David Grube
My mom paid a painful price for not completing an advance directive about her preferences for end-of-life medical care.
She was an intelligent and organized woman who had everything in her and my dad's life planned out and written down.
She even drafted her own obituary.
Ironically, she never discussed her end-of-life care goals with my father or her physician son (me), preferring to talk about "more pleasant subjects."
As a result, after she developed colon cancer at age 86, my dad and I had to figure out how to treat her post-surgical medical complications of heart and renal failure. She died in hospice care after prolonged, unbearable and unnecessary suffering. It broke both my dad's heart and mine.
Unfortunately,
my mothers story is all too common. Nearly one out of four older Americans (24
percent) say that either they or a family member have experienced excessive or
unwanted medical treatment, the equivalent of about 25 million people,
according to a poll conducted last year by Purple Strategies.
A key reason for
this problem is only about one out of six Americans (17 percent) say they've
had discussions about their end-of-life healthcare goals, preferences and
values with a doctor or other healthcare provider, according to a recent Kaiser
Health Tracking Poll.
Evidence-based
research overwhelmingly shows the need for more and higher-quality
doctor-patient conversations about the patient's healthcare goals, preferences
and values. The report "Dying in America" by the Institute of
Medicine noted that:
"Most
people nearing the end of life are not physically, mentally, or cognitively
able to make their own decisions about care...The majority of these patients
will receive acute hospital care from physicians who do not know them. As a
result, advance care planning is essential to ensure that patients receive care
reflecting their values, goals, and preferences."
One
important step that should facilitate advance care planning is the Centers for
Medicare & Medicaid Services' (CMS) recent decision to reimburse doctors,
starting Jan. 1, 2016, for communicating with patients about their preferences
and values about end- of-life care.
As
a next step, we urge CMS to stop reimbursing healthcare professionals for providing
unwanted medical treatment that directly violates a patients documented
end-of-life care goals.
In
addition, we encourage Congress to take additional steps to ensure that
Americans get the end-of-life treatment they want. They include:
*
Establish federal payment for palliative care consultations with healthcare
providers who will advocate for and support the values and choices of the
patient with an advanced illness or nearing the end of life.
*
Ensure that there are enough trained palliative care professionals to provide
this service.
*
Ensure advanced illness care encompasses access to an interdisciplinary care
team, such as board-certified hospice and palliative care physicians, nurses
and social workers.
*
Allow patients the option of enrolling in hospice while continuing to receive
disease-specific and restorative treatments if patients still want them.
Absent
these healthcare reforms, poor understanding of treatment options and/or lack
of acknowledgement of the extent of the illness may lead to inadequate
planning, dissatisfaction with the process, unnecessary medical treatment and
loss of quality of life.
Dr.
Grube is a board certified physician in family medicine and is a national
medical director for Compassion & Choices, the nation’s oldest and largest
end-of-life choice advocacy organization.