A medical emergency strikes. The ambulance comes and professionals start administering care. But what if that emergency is life or death and there’s no document to help doctors or family make critical decisions? It sounds dramatic, but sadly it’s a scenario continuing to play out across the state with far too many people in the mindset that end-of-life care happens solely in those critical moments before death.
But in reality, health care professionals say it can occur in the days, weeks, months and even years before dying. But how do you get people to talk about it, and better yet, to plan for it?
“We only have a little less than a third of our residents having that type of conversation when they’re in end-of-life, when they have a life-limiting illness. We’d like to see that number grow,” said Cathleen Bennett, president and CEO of the New Jersey Hospital Association.
A national poll from the Kaiser Family Foundation shows just one out of every 10 adults reported discussing their own end-of-life care wishes with a doctor, and it didn’t improve much with age. On top of that, only roughly one-quarter of all adults have written down their end-of-life medical wishes in a document. The vast majority are those aged 65 years and older.
That lack of clarity around patient preference has frequently resulted in expensive interventions. It can be care that’s inconsistent with patient wishes and unwanted aggressive treatment, according to the Governor’s Advisory Council report on end-of-life planning.
The state’s been emphasizing the use of several options to improve patient care, the most common being the advance directive. It’s a legal document with your medical choices that only goes into effect if its determined you’re unable to understand your diagnosis and treatment options.
The advance directive has two variations. One is the proxy directive, or power of attorney, where you appoint someone else to make health care decisions on your behalf, either temporarily or permanently. The other variation is the instruction directive, commonly called a living will. It includes your beliefs and values, along with instructions about life-sustaining treatment.
In 2011 legislation was signed creating the POLST, or practitioner orders for life sustaining treatment. This form, recently made available via an online registry, gives instructions for a range of life-prolonging interventions. It’s signed by a patient’s physician or advanced practice nurse and becomes part of their medical records. It follows a patient from one health care setting to another, including hospitals and even hospice.
What’s hospice? It’s both a place and a concept that helps people who are terminally ill live out their days comfortably. A team of trained caregivers provide physical and spiritual care — sometimes through the use of medicine, counseling and other means — either in the home or at a hospice facility.
Contrary to popular belief the service is not limited to the very end days of life and caregivers are also eligible for support. If the illness isn’t terminal, but still serious, palliative care is available. It focuses on relief from symptoms and stress with a goal to improve quality of life for both patient and family.
Despite the range of options, not enough residents are taking advantage of end-of-life care planning. While it’s no surprise that talking about death is wildly unpopular, the good news is that just talking about it won’t kill you.
On Thursday, March 21, NJ Spotlight hosts its first health care roundtable event of 2019 to discuss with an expert panel how to evolve and improve end-of-life care in the state.