Planning can help alleviate end-of-life suffering
We don’t talk about death. But your chances of going gentle into that good night are heightened if you do.
People of a certain age: While you’re cleaning out closets and pulling together your will, don’t forget to make clear any end-of-life health choices you want.
For many people, said Dr. Mat Philip, death is a very reactive, chaotic process that adds stress to a patient and their family.
The internal medicine physician and senior vice president of Value Based Care with Duly Health and Care, said, “A lot of what people want to happen at the end of life doesn’t really happen” for a variety of reasons, beginning with the absence of a plan.
“Studies show 80% of people want to die at home,” he said. But only 20 to 25% actually do, he said.
Our health care system, in general, passively moves people toward hospitals when end of life is near, he said. If you don’t want that to happen, there needs to be a clear conversation about your wishes, Philip said.
“Talk to your loved ones even before a diagnosis,” he said. “If there’s any kind of terminal diagnosis, let your health care provider know too, and create a practical plan for how that might work.”
Sure, it can be an uncomfortable conversation, but normalizing it can be very helpful for patients, family members and health care providers, he said.
When there is no plan, patients and family members wrestle with what they think the other wants or expects. When a dying person is not being treated how they want to be treated, there is added stress and anxiety, which can increase suffering, he said.
An advanced directive, he said, can ensure that you and those you love experience end of life in the calmest, most empowering way possible.
In a hospital setting, he said, “There are more tubes and wires they’re attached to, there are more invasive things like blood draws and being woken in the middle of the night to check vitals. And then a lot of people have tubes put in like ventilators and other things. As a result, during those last precious moments they have with their families, they can’t interact with them. It can really rob them of their time and it’s also really uncomfortable for them.”
As a physician who works with many high-risk patients, Philip said, “I’ve seen this situation play out many times.”
When the dying process begins, Philip said, family caregivers should enlist the help of someone outside the immediate family to deal with hygiene and medications.
That way, the caregiver can concentrate on just being a spouse or son or daughter, he said.
Hospice can be really helpful at this time, he said. It can help guide discussions and answer questions. Patients who have little information about hospice tend to have a negative feeling about it, Philip said. But patients who are familiar are much more positive about it. It’s important to know what hospice is and what it isn’t.
Hospice care is specifically for patients nearing end of life. Instead of focusing on treatment, it provides comfort and strives to enhance a person’s quality of life.
If we’re transitioning to a higher quality of life, for example, Philip said, “the patient should be able to eat what they want, because it’s about maximizing their quality of time left. So even if they are traditionally on a low-salt diet, at end of life, it doesn’t matter, we’re not striving for longevity.”
But, he added, “Don’t force them to eat. Dying patients can struggle with eating, which can cause choking, which can cause anxiety.
“Ultimately, the body knows when it’s time. The energy needs go down, people start eating and drinking less. One of the gentlest ways of going is when the kidneys shut down, because people kind of drift off into a comfortable sleep,” he said.
Knowing this may impact the kind of medicines you want or don’t want to take at end of life, he said.
The same can be said for treatments, such as chemotherapy, he said. If the medicine is not enhancing a dying patient’s quality of life, they may opt to stop it,
he said.
“I have a friend who never wanted to be on a ventilator. He ended up on one and some of his loved ones almost kept him on one in a long-term facility. But he had been very clear about not wanting that and other loved ones were able to grant his wish,” Philip said.
“I try to prep my patients for that. Time and time again, family comes back and thanks me for helping them prepare. They say, ‘We were able to be there and pray together and say all the things we wanted to say. It became like a gift,’ ” he said.
Pamela Palmer is care pastor at Good Shepherd Church in Naperville. She also was a hospital chaplain for 10 years.
“In death, or in any suffering, it is imperative that people are not alone. Loneliness amplifies the suffering,” Palmer said. “Though companionship does not erase the pain or fear of death, it can be a source of comfort.”
Palmer added there are emotional, spiritual, and physical ways to help calm someone who is dying or suffering at the end of their life.
“Physical touch, such as sitting bedside, holding hands, giving hugs, back or foot massages, or lying next to the person can bring peace,” she said. So can “hearing (familiar) voices or being talked to, reading Scripture or favorite books, saying prayers over the person, singing or playing music.”
When Palmer’s grandmother was dying, family and friends “would hug her and hold her hands. We would sit on the floor next to her bed and play games while she watched, we would talk with her, tell her what we were doing, and include her as much as possible. It brought her joy and comfort that we were nearby and that she was still engaged in the life of our family to the extent possible.”
Palmer also recommends that caregivers join support groups, or seek professional counseling, or find a trusted friend, pastor, or mentor they can talk to and process their journey with.
“Their hardships in caretaking are legitimate and should be recognized for the toll it may take,” she said.
Ultimately, both Palmer and Philip say, much of the anxiety too often associated with death can be relieved through early conversation.
“When family members know they’re honoring their loved one’s wishes, there’s a sense of closure,” Philip said. “There’s a dramatically different outcome and memory.”
“It’s worth planning for and having discussions about,” he said, adding, you can take things even further by planning your own burial, even purchasing your headstone, so that loved ones don’t have to do that while in the throes of grief.