February 13, 2020

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“Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking."
Atul Gawande, Being Mortal: Medicine and What Matters in the End

 
As health care providers we know that nothing is more certain than the finite nature of life. Skilled at managing the manifestations of illness and aging, we have undoubtably experienced innumerable victories and losses at the bedside. The elation of unexpected recoveries always counterbalanced by the unpredictable timing of the end of life. Bound by the limitations of modern medicine, we must delicately navigate this shared vulnerability with our patients.
When planned for and in memorialized in writing, a patient’s known wishes make critical decision making easier for all. Without these steps, these decisions can weigh heavily on families. As a family physician, nothing troubled me more than watching family members struggle with the unwanted task of making decisions on behalf of an unexpectedly incapacitated family member. Differing views of how to act in the patient’s best interest adds needless pain and suffering during these difficult moments. This pain is avoidable with end of life conversations and planning.

Blinded by the prevailing norm to exhaust every available treatment option before throwing in the towel, we lose sight of the fact that maintaining quality of life often prevails over lingering in a compromised state of suffering. “People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.” [1] Our end goal needs to shift from an inescapable desire to prolong life toward a ceaseless promotion of care enveloped by what matters most in a person’s final months, days, and hours.

Advance directives are legal documents to spell out decisions and wishes about end-of-life care ahead of time. They are designed to help patients and families avoid unwanted and at times futile medical interventions that can cause anguish for loved ones and prolong unnecessary suffering for patients. The impact on families and the health system alike, is invaluable. Medicare data shows that one-quarter of all Medicare spending annually – roughly $150 billion in 2018 – goes toward care for just 5 percent of beneficiaries who die each year. Others have suggested that we could save $1.7 billion annually with consistent use of advance directives.

A recent analysis in Health Affairs revealed a sobering truth, among 795,909 people in 150 studies reviewed from 2011-2016, only 36.7 percent had completed an advance directive, including just 29.3 percent with living wills. Similar proportions of patients with chronic illnesses (38.2 percent) and healthy adults (32.7 percent) had completed advance directives. We can do better.

The American population has a burgeoning demographic of baby boomers turning 65 each day. An unexpected shift of older Americans to rural areas is occurring simultaneously. There is a higher concentration of older Americans in rural counties than other areas. Of 1,104 older age counties in the country – those with more than 20 percent age 65 or older - 85 percent are rural.

Recent census data confirms approximately 1 in 5 or 10.6 million elderly adults currently live in rural locations. Many of these counties also grow older due to long-term outmigration of young adults thus leaving their elderly parents to navigate the complexities of aging alone. Infrastructure to support this trend is problematic as many rural areas lack sufficient capacity to address the growing challenges associated with aging. This reality creates an ever more urgent need to elevate and promote advance care planning (ACP) discussions earlier and more often.

A landmark 2010 study at Massachusetts General revealed an unexpected finding. When patients with a terminal diagnosis were assigned a palliative care specialist in addition to routine care, they stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. Your efforts make a difference. Similar other studies show that:
  • 80% of patients want to die at home yet 60% die in hospitals and 20% die in nursing homes.
  • 90% say talking about end-of-life care with loved ones is important but 27% say they have actually done so.
  • 80% of people say if they were seriously ill they would want to talk to their doctor about end-of-life but 7% report having the conversation with their doctor.
  • 82% say it’s important to put their wishes in writing but 23% have actually done it.

Contemplating your wishes at an uncertain future point of debilitation is difficult. Uneasiness about being denied potentially lifesaving interventions at a time of need drives people to avoid these conversations altogether. Advance directives are not intended to be entirely prescriptive but more descriptive of what matters most to you, what you value, and what’s meaningful to you. Most don’t recognize that these are intended to be living documents, modified over time, as circumstances and health status evolve and become more certain. Reviewing these goals and having available documentation is a GIFT to families and their proxies. It starts with a proactive conversation between care teams and patients at the bedside.CMS recognized the value of having ACP conversations early and often and is willing to pay for the effort. 

 

Common Terms used in ACP

Advance Health Care Directive (AHCD) A form defining end-of-life goals and assigning someone to make health care decisions if a patient is incapacitated; States often allow special instructions for pain management, nutrition and hydration etc. Everyone should have one regardless of age or health status.

Health Care Agent/Proxy/Power of Attorney The person assigned to make health care decisions on your behalf.

Living Will Form to de­fine end-of-life goals and wishes in more detail than usually allowed in AHCD.

Power of Attorney State specifi­c form assigning someone to make fi­nancial decisions if incapacitated (does not include health care decisions).

POLST* (physician orders for life-sustaining treatment) Orders used outside of a hospital to de­ny treatments, i.e. CPR, ventilator. Only for people with advanced illness and limited life expectancy. *Some states call this a POST or MOLST but serves the same purpose (www.polst.org)


To encourage more physicians to take the lead, in 2016, Medicare began reimbursing for ACP counseling for beneficiaries. There are several different billable scenarios depending on the amount of time and effort that goes into these conversations. A few key rules are noteworthy:

  • ACP services furnished on the same day and by the same provider as an AWV are considered a preventive service –

    • No co-pay or deductible applies if performed within AWV visit.

    • It is an optional component of the AWV at the patient’s discretion.

    • If done at another time, co-pays and deductibles apply.

  • Face-to-face service (with patient, family or proxy) discussing advance directives, with or without completing relevant legal forms.

  • Requires patient consent which can be verbal and then documented

  • All patients should have their wishes reviewed annually to be sure that what is documented still re­flects their goals and desires and proxies remain accurate. This may not take much time but is increasingly important as people advance in age and illness.

We need to normalize these conversations by starting them early and reviewing decisions made on a regular basis. A recent survey showed more and more Americans are having end-of-life conversations. It’s worth noting that a majority of respondents would be relieved to have those conversations. By determine proxies for decision-making, establishing patient goals for end-of-life and exploring what “quality of life” means to patients, we are avoiding a potential family crisis and unwanted care during the fleeting moments that matter most.

Central to any value-based care strategy is coordinating and helping patients navigate an exceedingly complex health care system – end of life conversations are no different. These conversations are paramount to your future success in value-based care.


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