PATIENT ADVOCATES ARE DESPERATELY NEEDED: PART I

PATIENT ADVOCATES ARE DESPERATELY NEEDED: PART I

PATIENT ADVOCATES NURTURE HOPE

I have served as a volunteer patient advocate for 35 years. The deepest kinds of suffering I encounter are profound unhappiness and loneliness, resulting in loss of hope. It is difficult for people who are intensely unhappy to believe that they will ever be happy again. That is when they desperately need a true friend. A patient advocate, in a very real sense, can be compared to a lifeline tossed to a drowning person. Patient advocates save lives and souls, one person at a time.

In spite of everything that is making the patient’s life difficult, a patient advocate’s presence or caring voice on the phone can restore a patient’s belief that life is worth living simply because another person considers them worthy of their concern, time, and protections.

What or, more aptly, WHO is a patient advocate? Anyone – a relative, friend, volunteer, or caregiver – whose primary focus is safeguarding the welfare of the patient. What could be more important to a patient’s welfare than hope?

Hope is easily destroyed by healthcare providers who perceive certain patients as being of “low value”; who treat them as though they have “lives not worth living.” 

All Patients Are Not Treated Equally

A drastic shift had taken place in medical ethics. In the 1960s and 70s, the truth that every human life has equal worth was rejected by utilitarian-minded bioethicists. “Bioethics” became the new name for medical ethics. Many bioethicists do not adhere to Judeo-Christian moral principles. They have rejected standards of good and evil and embraced the secular notion of “usefulness”: those who do not “contribute” to society or who are considered inconvenient and/or costly to care for can be cast aside as physically or socially suffering and, therefore, “better off dead.” 

This utilitarian mindset can be illustrated by quoting Dr. Ezekiel Emmanuel. In 1993, he wrote in the American Journal of Medicine:

Increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. [Emphasis added.]

Dr. Emmanuel would later be the chief architect of Obamacare. That should frighten everyone. Biased doctors who decide “what lives are worth living” are playing God, not practicing medicine.

Patients who are perceived as being of “low value” frequently are given less care. Also, they are urged to fill out and sign medical advance directives or POLST (Physician Orders for Life-Sustaining Treatment) forms refusing treatment, or to consent to do-not-resuscitate (DNR) orders when such non-treatment orders are likely to result in their premature deaths. Patient advocates may be able to protect vulnerable patients from signing away their right to life-sustaining treatment. But that task is made easier when the patient has hope and believes life is worth living.

Reasons for Hope

Unlike “limited” healthcare resources whose allocation is often, justly or unjustly, determined by calculations of cost and quality of life, hope is a vital resource that has no limit, no cost, and is always beneficial.

There is always reason for those who are sick and suffering to hope, even when death may be approaching.

  • Hope for a cure, or at least for more time, because life is never more precious than when we know our time may be running out
  • Hope that there are still things to achieve and enjoy
  • Hope for moments of joy with family and friends
  • Hope for mending broken relationships
  • Hope for spiritual growth
  • Hope for tender loving care and control of pain and suffering
  • Hope for a peaceful death
  • Hope for eternal life

A patient advocate must never let anyone tell a patient, “It’s hopeless. There is nothing more we can do.” There is always something more that can be done, even simply sitting by the bedside, holding the patient’s hand, and praying.

We may not be able to add days to a patient’s life, but we can add life to their days.

Julie Grimstad is President of HALO (the Healthcare Advocacy and Leadership Organization)

Learn more about patient advocacy: contact the HALO Helpline by calling 888-221-4256(HALO) or email feedback@halovoice.org.

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