A Good Life And A Good Death: What Is Palliative Care?

NPR Radio – “He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative. Read More

As coronavirus spreads, more people thinking about end-of-life directives 

NBCNews – Many are considering medical instructions, guardianship designations and other legal contingency plans.

Even though Jayne Marlink has gone through cancer, a mastectomy, a hysterectomy and several other serious health scares over the last decade, she never felt the urgency to put together an advance health directive advising her son what to do in case she didn’t pull through.

But last week, as she watched the coronavirus pandemic rapidly unfold from her home in California, where over 1,000cases of COVID-19 have been counted, she wrote down her last wishes.

The possibility of prolonged sickness or even death from COVID-19 triggered an urgency in Marlink, 67, a retired educator from Sacramento.

“I’m vulnerable and I’m in that target age, and I knew I had to get this end-of-life stuff done,” she said. “This has put me face-to-face with my responsibility and what I need to do to make things easier for my son should anything bad happen. Read More

An advance directive can bring peace of mind

Do you have an advance directive? Do you even know what one is? You’re not alone. A 2014 study published in the American Journal of Preventive Medicine found that out of 7,900 people surveyed, only 26 percent had an advance directive.

Nationwide, it’s estimated that only one out of six Americans say they’ve had advance care planning conversations with a doctor or other health care provider. The main reason given for not having an advanced directive? Lack of awareness.

Well, let’s take care of that first. Advance directives are two legal documents that express your end-of-life wishes should you be unable to communicate them yourself. One — a living will — allows you to choose the level of care you want in the event of medical crisis. The other — medical power of attorney — allows you to choose someone to make decisions on your behalf. In Virginia, these two documents are combined in one form, while in other states two separate forms may be required.

Another reason cited for not having an advance directive is the belief that it is complicated, requires a lawyer and is expensive. Not true. State forms are readily available on the internet, at the Virginia State Bar website (vsb.org), the National Healthcare Decision Day (April 16) website (nhdd.org), the National Hospice and Palliative Care Organization website (nhpco.org) and locally on the Jefferson Area Board for Aging’s website (jabacares.org/advancedirective).

In addition, JABA, the University of Virginia Health System, Sentara Martha Jefferson Hospital and Hospice of the Piedmont all have endorsed Healthcare Decisions Day and have committed themselves to raising awareness and educating the community about the importance of creating advance directives. You also can visit asyouwishvirginia.organd agingwithdignity.orgfor resources and support. Then all you need are a few bucks for a notary. It’s that easy.

Of course, many people resist or put off creating an advance directive because it’s often an uncomfortable and difficult issue to discuss. But it doesn’t have to be.

“The importance of having an advance directive benefits not only the individual, but the family members and other professional health care providers that may need to care for someone facing a serious or life-limiting illness,” J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, noted in a statement on the 2014 study. “Equally important are the frank conversations that loved ones have with each other and care providers about the care that they would or would not want.”

Indeed, most families find that discussing these issues brings them closer and gives them more peace of mind. And it’s important to remember that advance directives are not just for older people with health issues. Any one of us, no matter what age, could find ourselves in a medical crisis as a result of a sudden illness or accident. Under those circumstances, how would you like to be cared for — and who would like to be making decisions for you? Creating an advance directive when you are healthy gives you the space and time to really think about what you would want.

One other misconception: People think an advance directive is just about the decision to “pull the plug” or not. It’s not. Some people value prolonging of life over all else, whereas others prioritize relief of pain and suffering or the effects of one’s care on loved ones. It’s your chance to tailor your medical care based on your own beliefs.

Remember, too, that having an advance directive can take an enormous burden off your loved ones. Think about how difficult it would be having to make an end-of-life decision for someone you love if his or her wishes were not known.

Having that conversation ahead of time makes it much easier on those you love should a medical crisis occur. For help having that conversation, you can visit The Conversation Project at theconversationproject.org.

Advance directives also can deepen your relationship with your doctors and other caregivers. It gets them on the same page with your wishes, so that they are more informed and personally involved with your care in a crisis situation.

Of course, there still can be trouble when critical decisions about your care need to be made. Doctors may disagree with your instructions, or with your family member, and your family may disagree with your doctors or with each other.

There still can be stress and tension under such emotional circumstances. But one thing experts agree on: It is much more stressful and difficult if you don’t have an advance directive.

David McNair handles publicity, marketing, media relations and social media efforts for the Jefferson Area Board for Aging.