Information is key in an emergency situation.
It’s one thing for older people to come to a resolute decision that they don’t want “heroic” efforts made to save their lives in the event of a life-threatening condition.
Sometimes, as The New York Times pointed out a while back, it’s quite another to get that directive followed.
The story on an elderly man, faced with increasing dementia, who wrote a directive in 2011 saying he wanted comfort care only. Four years later, after his communication skills had seriously eroded, he began to die in his nursing home.
“The nursing home that cared for him sent him to a hospital, where doctors put him on a ventilator,” the story continued. “They slowed the bleeding, but couldn’t stop it. After a week and two surgical procedures, the patient was transferred to Johns Hopkins. There, physicians stopped the nosebleed, performed a tracheotomy, a procedure to create an opening in the throat that would permit long-term ventilator use, and placed a feeding tube in his stomach.
“Two weeks after that, a surgeon happened to find the patient’s advance directive in his medical chart. None of the other health care providers had noticed it, which meant they had all inadvertently violated it.”
The man’s son, who had agreed to the life-sustaining procedures, was unaware of his father’s written decision regarding them.
“He very much wanted to follow his father’s wishes,” Dr. Rebecca Aslakson, a critical care anesthesiologist at Johns Hopkins Hospital in Baltimore told The Times.
“Ever since Congress passed the Patient Self-Determination Act in 1990, health professionals and consumer advocates have urged Americans, especially older adults, to draw up advance directives and distribute them to families and doctors,” the article continued. “The documents allow people with terminal illnesses to accept or reject medical interventions and to appoint surrogate decision makers if they become incapacitated. The campaign does seem to have paid off in one sense: Among Americans over age 60, the proportion who had advance directives when they died rose to 72 percent in 2010 from 47 percent in 2000, according to data from the national Health and Retirement Study.
“Too often, though, an advance directive hardly seems to matter. Stories abound of documents misplaced, stashed in safe deposit boxes, filed in lawyers’ offices.”
The upshot is that family members and loved ones need to communicate with one another, even about something as sensitive as dying.
No one wants to contemplate his or her incapacity or even death, but everyone should.
“Who speaks for you if you are not able to speak for yourself?” begins a recent article on PBS “News Hour” story . “Who determines what kind of care you want at the end of life, how your finances are handled, how your estate will be distributed? You do, but only if you’ve prepared ahead of time. “
The documents are fairly straightforward, yet many people postpone taking action to complete them. It isn’t easy to think about your own incapacity or death. But these important legal and health care decisions not only protect your own interests, they protect your family and loved ones by clarifying the kinds of care you would like to receive if you are seriously ill.”
Among the documents cited in the story is an Advanced Health Care Directive. Also called Living Will, Durable Power of Attorney for Health Care or Health Care Proxy, the directive “saves your family from having to make very difficult decisions about your care in times of grief or crisis,” the story points out.
“Often used to decide about the use of feeding tubes, ventilators, pain management, organ donation and other issues when someone is unconscious or at the end of life. Each state has slightly different versions of the form, but a form from one state will be honored in another state.
“Hospitals and most doctors’ offices will provide you with the form upon request.”
Also mentioned are, naturally, a last will and testament as well as possible living trusts.
Having compiled these important papers, a person has one other important thing to do, the PBS piece states: let others know where they are.
“Have a central place for wills, trusts, powers of attorney, etc., or a document describing where they are so family members will know where to find these items. Include information about your Social Security number, safe deposit box, birth certificate, life insurance, contact information for attorney, and other important details.”
When it comes to parent-child relationships, “the talk” isn’t only from mom and dad to their offspring, and it doesn’t only deal with the facts of life.
As noted in an article by Jane Bryant Quinn in the January AARP Bulletin, an important communication among family members involves financial matters.
“What should you tell your adult children about your money?” Quinn writes. “That’s a question all of us confront. Some people think it’s none of the children’s business. A few tell all. Most of us are probably somewhere in the middle, revealing some things and reserving others, depending on our own feelings about money and whether the facts might cause anyone distress.”
The author consulted members of the National Association of Personal Financial Advisors, who are all fee-only financial planners, and found, she writes, that they “lean strongly toward having ‘the talk.’ ”
“Start by telling the children where to find your will, health care directive, financial records and any life insurance policies,” Quinn advises. “If the will leaves them uneven shares, explain your decision. Often, the children will understand. If you can’t bring yourself to discuss their shares in person, at least leave a thoughtful, explanatory letter so that the siblings won’t start blaming each other for secretly currying your favor. Tell them, too, if one of your children has power of attorney or is the executor of your will.
“They should hear this from the parents,” Marc Roland of Dean Roland Russell Family Wealth Management in San Diego was quoted as saying. “If they learn only after your death, they might think that mom and dad loved one kid over another.”
Yes, there’s an app for that.
“While most all Americans think it’s a good idea to talk with their loved ones about end-of-life care, less than 30 percent have actually done it,” according to a recent posting on the website of the American Bar Association.
The organization has come up with a free solution to this dilemma in the form of an application that works on both Android and Apple smartphones. It’s called My Health Care Wishes Lite and it “gives individuals the ability to store and share important health care wishes,” the website states.
“In an emergency, you’ll have immediate access to a PDF version of your advance directive. An important document like this doesn’t belong tucked away in a safety deposit box or in a file cabinet somewhere. Import and store it on your smartphone so that it’s there for medical decision-making anytime, anywhere.
“Your information is protected because the data resides only on your smartphone, not on any server or cloud service.”
“Most of us haven’t given much thought to health consent and other related matters surrounding medical complications, life support or end of life,” according to the page for the app on Google Play. “But seeing the service provided by this app the added value and purpose is clear: this is certainly something anyone 18-plus could use for peace of mind. In the future, health care professionals will look first on your smartphone for the easily recognizable My Health Care Wishes icon instead of searching for a wallet card.”
There is a “pro” version of the application, which sells for $3.99 and offers more functions.
“It also allows you to create a digital library containing your advance care plan and those of your spouse, parents, children, and anyone you care for,” according to the ABS. “Your loved ones may be away at college, in a retirement community or nursing home, working in a different city, or under the same roof. Imagine having your wishes and those belonging to your loved ones stored in one place, just a click away. You can carry their health care wishes on your smartphone and they can carry your wishes on theirs.”