Why we do the work we do

January 7, 2015

In his sixth installment of the “Business of Dying” series, ‘Warehouses for the dying’: Are we prolonging life or prolonging death? The Washington Post staff writer Peter Whoriskey, brings to light many of the sad realities faced when terminally ill elderly patients spend their last days or weeks receiving aggressive treatments in hospital intensive care units. The reasons are divided, but Americans inability to cope with their mortality, coupled with the fact that doctors are reluctant to disappoint patients with the grim truth are surely two of the major players. The third, as you might have guessed, money.

“Financial incentives built into the programs that most often serve people with advanced serious illnesses — Medicare and Medicaid — encourage providers to render more services and more intensive services than are necessary or beneficial,” according to Dying in America, a massive report issued in September by the Institute of Medicine.

Whoriskey focuses on the ICU at Sentara Norfolk General in Virginia interviewing medical personnel about the toll taken on patients and staff to prolong the inevitable, many times at great personal and financial expense. ICU Dr. Paul Marik says that patients too often suffer in vain attempts to prolong life, because of the mandate to “do everything.” The urge to deploy every last aggressive medical technique, in other words, was hurting people.

“I think if someone from Mars came and saw some of these people, they would say, what have they done to deserve this punishment?” said Marik, gesturing to the surrounding rooms. “People might say we are prolonging life, but we end up prolonging death.”

A 2013 survey conducted in one academic medical center, for example, found that critical care clinicians believed that 11 percent of their patients received care that was futile; another 9 percent received care that was probably futile, it said.

Marik’s long-standing argument, which is notable in part for coming from an ICU doctor, is this: The nation has double or triple as many ICU beds per capita as other Western nations, it spends inordinate amounts of money in the last months of life, and worst of all, this kind of care isn’t what patients want.

One of the patients filling his ICU bed was a woman more than 90 years old, with blood pressure and severe kidney problems as well as severe dementia. She was being fed through a tube and had a urinary catheter. Most imposingly, the woman was breathing via a ventilator, and to prevent her from removing the tube that had been inserted into her mouth and down her throat, restraints tied her hands to the sides of the bed. These aggressive interventions are a heavy burden for ICU medical staff to carry out, especially hard on nurses because of the amount of time they spend with each patient. “You honestly feel like you are just causing more harm or pain to the patient and you wonder if their family really understands what’s going on,” remarked Becky Devlin, Sentara Norfolk General’s supervisor in the ICU.

Why are family members, patients and most importantly medical professionals so hesitant to discuss hospice when it is so obvious that this care is what the patient really needs? Once again we return to the reasons listed above.

Thankfully, for Housecall Providers patients this heart wrenching, end-of-life ICU scenario is a rarity because our ‘continuity of care’ centers on honest communication from the beginning of the primary care relationship. Our nurse practitioners, physician assistants and doctors work to build trusting relationships with patients and family members/caregivers so that when hospice care is the appropriate intervention, it is likely not the first conversation on the topic.

“The hospice community is not only powerful enough to change the system, we are obligated to change it one patient and one death at a time,” remarked Housecall Providers Hospice Director, Rebecca Ashling, MSN, RN. “It starts with demystifying what comfort at home and at the bedside can be for our patients and their families. As the process unfolds, people begin to share with others their experiences with hospice and then those people feel empowered to have meaningful conversations with their loved ones. This is how we begin to change society’s expectation from curing at all costs to compassion and comfort for all,” she continued.

As a result, the transition to hospice care will not be “the bomb” that many families and patients describe, but rather a timely addition of services that assures the patient is being supported physically, emotionally, and spiritually as they enter the final phase of life. Nothing is being “taken away”, in fact, their Housecall Providers primary care provider remains a valued member of the treatment team, relaying pertinent information from months or years’ worth of caring for the patient. Subsequently, last year not one of our hospice patients had to endure the ICU in their final days, instead, living in the comfort, security and familiarity of their homes and feeling, we hope, completely supported.

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