By Thomas Goldsmith
A team of emergency technicians rushes into a North Carolina home where someone has had a stroke and is near death, someone who has said she doesn’t want to undergo resuscitation when at this point. Nonetheless, emergency workers try to bring her back to life, despite her wishes.
This situation happens far more often than doctors, lawyers and health-care facility operators would like. That’s true even though advances in law and reimbursement practices have made it easier for people to create a record of the amount and level of medical intervention they want when they can no longer speak for themselves.
Making sure end-of-life wishes are on the record not only helps those who want all feasible steps taken to preserve life, but it’s also supposed to ensure appropriate treatment for those who want only minimal care.
“In a health care setting, the culture is curative,” said Melanie Phelps, senior vice president, health system innovation and deputy general counsel at the North Carolina Medical Society.
“Some people want everything done, so you should say that, and liberate your family from having to guess what you might want done.”
Phelps, an 18-year employee of the society, has for years given talks to groups about the legal and medical documents that specify the level of treatment that patients want. She’s among the North Carolina professionals who are pushing for people — and not just older people — to discuss their wishes with family and create advance directives before a life-threatening crisis hits.
To encourage these talks, Medicare started paying doctors in 2015 to have discussions about advance directives with patients. In 2016, the last year for which data is available, 19,056 Medicare beneficiaries in the state had average visits of 30 minutes in which to discuss the matters, at a cost to Medicare of about $1.3 million after deductible and coinsurance amounts were subtracted.
A University of Washington study found that the use of advance-directive consultation nationally would save $1.9 billion in intensive care unit treatment of 2 million patients with life-limiting illnesses during one year.
According to a Gallup poll, the number of people in the U.S. without an overall will and testament has decreased since 2005, when troubling end-of-life cases such as that of Terri Schiavo made reams of headlines and drove up the number of will signings. Only about one in four people has prepared an advance directive, sometimes called a living will, for end-of-life care, according to a 2014 academic study.
Speaking through documents
In North Carolina, legal documents, or advance directives, can guide doctors as they create medical orders. They can be prepared by a lawyer, but don’t have to be.
- The living will, known as the declaration of desire for a natural death, communicates what level of care a person wants at the end of life.
- The health care power or attorney appoints a person to speak and make decisions about the patient’s care.
These documents contain a person’s specific wishes about care and can help a doctor prepare medical orders. But they cannot stand alone to direct professionals to perform actions such as discontinuing ventilation or nutrition. A medical order is needed to allow such decisions.
Medical documents allow doctors, for example, to decide whether to undertake life-prolonging measures for a person who’s terminally ill. They can also be followed by other providers such as emergency medical technicians.
- The portable “do not resuscitate” order, or DNR, governs whether a person wants CPR at the end of life. If a patient is still at home, the DNR must be posted somewhere prominent, such as over a bed or on a refrigerator, so that emergency personnel can spot it.
The language on the attention-getting yellow and red form is plain: “In the event of cardiac and/or pulmonary arrest of the patient, efforts at cardiopulmonary resuscitation of the patient SHOULD NOT be initiated. This order does not affect other medically indicated and comfort care.”
- The MOST form, for Medical Orders for Scope of Treatment, governs a broader range of situations. Someone using the MOST form can indicate whether medical professionals should use interventions such as intubation, advanced airway interventions and mechanical ventilation.
The person can also decide whether doctors should use antibiotics and medically administered fluids and nutrition.
Cooper Linton, vice president of marketing and business development at Transitions LifeCare, says the best treatment depends in any case on the preferences of the person being treated.
“We default to maximum treatment and I’m not sure we should always equate massive treatment with maximum care,” Linton said.[sponsor]
The downsides of a lack of preparation become evident when families gathered at a beloved relative’s side lapse into arguments over whether the person’s life-prolonging care should be extended or ended, Secretary of State Elaine Marshall said during a recent radio appearance on the topic.
Marshall’s office keeps a statewide registry of advance directives on a web database, where both family members and medical professionals can consult the information that may ward off quarrels during a patient’s final hours. Gaining access requires a password that can be shared with family or other caregivers and there’s a $10 charge per item.
“I’ve seen in my own law practice families that were divided, never spoke to each other, the siblings, for years and years and years because of things that happened and were said at the bedside,” Marshall said, “when really the person there should have been getting the most loving care. Yet the environment was filled with tension.”
Such conflicts can happen when a family member who has been long absent shows up and insists on a specific level of care for a relative near death.
“The root problem is that we as Americans don’t plan or talk about death the way we plan for marriage or for buying a car or for having a child,” Phelps said.
“It is important for families to know what mother and daddy’s wishes are, how they want to be cared for if they can’t actually speak up,” Marshall said.
Trouble spots can arise
Even with the use of these documents, planning has to be thorough and involves several steps, as Phelps can attest. An attorney who’s been involved in long-term care matters for more than a decade, she found herself without the right papers at the right time when her mother, 76, had a heart attack in January.
For 30 minutes in which Phelps was away from the hospital dealing with another emergency, medical staff administered CPR or cardiopulmonary resuscitation, a devastating procedure that neither her mother nor the family would have wanted.
Even when properly performed, CPR often breaks ribs, and if the person survives, they are frequently left with brain injury from extended lack of oxygen. Large analyses of CPR have found that fewer people survive than is commonly believed and people who are sick to begin with are even less likely to ever walk out of the hospital.
“When you see CPR on television, it’s not as brutal as it is in person,” Phelps said. “If we had had that portable DNR or the MOST form, she would have been spared 30 minutes of CPR. That’s a pretty brutal way to go out.”
Another wrinkle for Tar Heels is that North Carolina differs from most other states in requiring that advance directives be signed by two “qualified witnesses” as well as being notarized.
According to Phelps’ presentation:
“Qualified witnesses are those who: are not related within the 3 degrees of kinship to principal or principal’s spouse; are not entitled to inherit any portion of principal’s estate; not a paid health care provider; and does not have a claim current claim against the principal’s estate.
“It’s a barrier to getting these things completed,” Phelps said of the requirement to have witnesses and a notary involved. “There’s still interest in making it less onerous.”
Linton encounters advance directives and medical orders regularly through his work at the agency, formerly Hospice of Wake County.
“We will help them get the documents and prepare the docs,” he said of Transitions clients.
“It’s really imperative that people get them when they can still fill them out. People often associate these documents with hospice, but in reality these documents are critical years before people are involved with hospice.”
The North Carolina Medical Society and Transitions LifeCare in Raleigh are sponsoring April 14 informational sessions on advance directives.
The North Carolina Partnership for Compassionate Care posts statewide a listing of informational sessions here. Some duplicate the events above.