When radio personality Casey Kasem passed away last month at the age of 82, news stories focused as much on the legal battles waged by his family as they did on Kasem’s 40-plus years in the entertainment industry.
Kasem, perhaps best known as the host of the widely popular “American Top 40” countdown, suffered from Lewy body dementia, a progressive form of dementia similar to Alzheimer’s disease. And though Kasem allegedly signed legal documents giving his three oldest children the authority to make decisions regarding his healthcare when he was no longer able to do so, his final months were marked by legal battles and acrimony between his children and his second wife, Jean Kasem.
Instead of spending Kasem’s final days remembering and reminiscing, his family fought over his care.
It doesn’t have to be that way, says Andy Land, director of Hospice and Palliative Care services at Agnesian HealthCare.
“A death in the life cycle of a family is probably the most powerful event that’s ever going to happen in that family, and the opportunity for growth is tremendous,” Land says. “If family members can talk to each other, they can grow closer than they ever have been before.”
Barriers to honest discussion
Yet many families refrain from talking about death due to fear, discomfort and denial, despite the fact that the death rate for humans remains at 100 percent.
“There is a social misconception that death is a bad thing, but all of us are going to die, one day or another,” says Punit Kumar, MD, Agnesian HealthCare’s medical director of Hospice and Palliative Care.
“In America, we believe that if you talk about dying, it’s going to bring it on, and that if you don’t talk about it, it’s not going to happen,” Land says. “Of course, we know that’s absurd intellectually, but that’s how we act.”
Avoiding conversations about the end of life effectively inhibits living, because family members find themselves called upon to make medical decisions in crisis mode, while under stress. Discussing your wishes – both in regards to how you want to live and how you want to die – allows you and your family to spend more time and emotional energy on the things that matter most. Things like making peace. Saying, “I love you.” Giving and receiving forgiveness. And telling stories.
One patient Land helped was a woman with Lou Gehrig’s disease, a progressive disease that eventually causes paralysis of all the muscles of the body. The patient was experiencing difficulty breathing, so her doctor scheduled her for a tracheostomy, a procedure that places an artificial airway at the base of the patient’s neck.
The doctor knew that the patient would die without the procedure. The patient knew she’d die anyway; the procedure, she knew, might prolong her life a bit, but would also increase her risk of contracting an infection and make it difficult for her family to care for her. With a tracheostomy, she knew she’d likely end up in a long-term care center, and she wanted to remain at home, with her family.
Ultimately, the patient declined the procedure. “It’s not that she wanted to die,” Land says. “She recognized that her death was going to happen whether she wanted it to or not, and she wanted to have some say over how that occurred.”
A better way: Advanced Directives and Healthcare Power of Attorney
Wisconsin residents can outline the care they would (and would not) want with a legal document called an advanced directive. An advanced directive allows a competent adult to clearly state what kind of medical care he would and would not like (and under what conditions). An advanced directive can also be used to appoint someone your “healthcare decision maker,” in the event that you are no longer able to make your own decisions.
Without an advanced directive, your healthcare providers will look to your family to make medical decisions on your behalf, and that’s not an ideal situation. For one, “you’re putting a lot of pressure on your spouse or loved ones in what’s going to be an impossibly difficult situation,” Land says. “They can’t possibly make good solid decisions under that kind of stress and pressure. Also, in the United States, if there’s even one family member who disagrees, we’re going to keep doing everything until we can get some kind of consensus.”
In other words, if you don’t want a feeding tube used to sustain your life, or don’t want your heart shocked and restarted if it should stop, you need to let your family know, now, and complete some simple forms to make sure your wishes are honored when the time comes.
“It’s really important for everybody to complete an advanced directive, no matter what age you are,” Land says, “We may not have until tomorrow to make those decisions.”
Agnesian HealthCare offers multiple resources to help individuals with advanced directives and end-of-life planning. The Agnesian HealthCare web site (agnesian.com; type “advanced directives” in the search box) includes basic information about advanced directives and an advanced directives form you can print out and complete.
Ripon Medical Center offers an Advanced Directives workshop at 2:30 pm on the second Tuesday of every month; call Linda Powell at (920) 748-9134 for more information. Care Management associates at Ripon Medical Center (920-748-9134), St. Agnes Hospital (920-926-4750) and Waupun Memorial Hospital (920-324-8410) can also answer questions and provide assistance.
Many local attorneys include advanced directives in their estate planning services.
Agnesian HealthCare also offers hospice, palliative care and bereavement services to support families. With conversation and support, families can spend their final months and days growing closer, instead of further apart.
For more information on Hospice Hope and Palliative Care services at Agnesian HealthCare, call (920) 923-7950.