Most Americans say that given the choice, they would prefer to die at home, but about 1 in 5 deaths in the U.S. occur after admission to an intensive care unit. In the book “Extreme Measures: Finding a Better Path to the End of Life,” Dr. Jessica Zitter details what she calls the “end-of-life conveyor belt” — a type of care in which dying ICU patients receive painful treatments to be kept at alive at all costs.
“Unfortunately, by the time someone is on the conveyor belt, it’s often too late to talk to them about what they want. And then everybody is trying to play catch-up. And it’s hard to get it right when the chips are down and there’s so much emotion,” said Zitter, who specializes in palliative medicine and critical care.
“So my recommendation is to talk about these issues early on in life, maybe starting when you become an adult. Start to think about your mortality, and visualize how you would want things to go for you when you get into that stage of life, the end stage. Communicate honestly.”
Filling out forms for so-called advance care planning goes a long way. But “it’s as important that you, number one, identify a person you trust — or two or three [people] — that can honor your wishes,” Sethi said, “and have the conversations ahead of time, before you’re in the state where you can’t communicate your needs and wishes.”
Some hospice workers recommended Five Wishes, an advance care planning program, as one way to get clarity on how you want things to go.
Morgan recommended playing a card game called GoWish with a friend, a partner or someone else you hope will follow your end-of-life wishes. “[The cards] have different statements on them about possibilities of what you might want or not want,” she said. “And you make stacks of the ones that you like, the ones that you know you don’t care about, and the ones that you’re not sure about.”
Someone playing the game may find it difficult to choose which cards represent their values, which is why Morgan suggests having two people play together, so that it can be a conversation starter.
Keep in mind that there is no one right way to die, and preferences may differ.
“There are people who feel that every moment of life is precious and that they value the length of life over the quality of life,” Eichholz-Heller said. “So they are willing to endure a certain amount of suffering to be able to be kept alive. Then there are other people who value quality of life over length of life. And they would rather focus on comfort, even if it means that they won’t live as long.”
There are still a lot of negative associations with hospice care, even though it can be helpful.
There’s a difference between palliative care and hospice. Palliative care workers help to make patients comfortable at any stage of their life if they’re suffering; hospice is a medical service specifically for people with a short-term life expectancy. While anyone living with a serious illness can seek palliative care, Medicare will help cover hospice care costs for people in the U.S. if their health care provider certifies that they are terminally ill and have six months or less to live.
Some people wrongfully assume that going into hospice automatically shortens the life of a patient. Smith said she has been called a murderer for working in hospice care, adding that the worst myth about hospice workers is that they kill their patients.
“People think that when you go on hospice, it’s a death sentence and that death is imminent,” Smith said. She cited former President Jimmy Carter, who entered hospice care in February and is still alive today, as one prominent example of how that is not always the case.
In fact, research shows that seeking palliative care at an early point can improve quality of life. Published in 2010, one study on advanced lung cancer patients found that offering early palliative care on an outpatient or ambulatory basis led to fewer clinically significant depressive symptoms and a longer median survival.
“When patients are suffering, they use so much of their energy just to fight the suffering that if we can make them comfortable, they sort of stabilize,” Eichholz-Heller said. “And a lot of times, it really helps them to live longer.”
Hospices can differ in their approach to care and the additional services they offer. There are resources that can help you figure out the right questions to ask to select the best hospice for you or a loved one.
We can’t control death.
Source: https://www.buzzfeed.com/monicatorres2/death-misunderstandings-palliative-hospice-care-7529796
