September 10, 2012
Facing a Grave Illness
Should doctors tell their patients when death is imminent? Would the news make a difference?
A while ago, my dad had bad stomach pain. He called the doctor, and the doctor said, "Oh just take some antacids." He took antacids for about a week, but the pain didn't go away. The doctor went "down periscope" and discovered that my dad had a rare form of stomach cancer, and it was bad. He underwent surgery and then did chemo (which you all know how pleasant of an experience that is). While this was going on, I asked the doctor if he could explain to me what was likely to happen next based on what he found. He said he'd give him about five years. I thought, "OK, he's 61. Five years is great."
He was dead in six weeks.
As it seems, a huge percentage of doctors don't want to eliminate hope or upset anybody, so they exaggerate. It makes it difficult for everyone involved for a couple of reasons. First, the person who's dying may want to sort of tidy up his or her life by remedying some relationships or putting some business things in order. In addition, caregivers need to plan their lives too, especially since they put all their focus and energy into taking care of the ill person.
In my dad's case, the cancer had metastasized to his brain and it took very little time for him to die. It was stunning. He had led such a healthy life except for several gin and tonics every night. Otherwise, he ate nauseatingly healthy food. You'd open up the refrigerator at my house and you'd say, "Is there nothing here to eat? This is all way too healthy." I did try - although it was pretty grim - to have a conversation with him about what his wishes were before he passed, but he wasn't up for talking about it. It's because of this that I think it's really important to know the truth about your loved one's quality of life - How is the disease going to progress? What are you going to need to do? What are you going to feel like? - before it's too late.
I realize that some people want to know the truth and some don't, but that's exactly why a doctor should ask and not just soften the news. Hope is nice, but "hope for the best to prepare for the worst" is probably smarter. Of course doctors don't know when the end is going to come exactly (they're not soothsayers), but they know enough from their experience, generally speaking, to be able to say, "Don't plan past Thursday," or "Don't plan past next year." And yes, there are always exceptions every now and then (i.e. the doctor says that the person is going to die sooner than later, and it happens later), but usually they can make a good guess.
The doctor should also ask if he or she should tell the patient's family. Getting permission to tell the family is very important because when doctors withhold information, it becomes more difficult for the family to chart the patient's course in life. And moreover, if the doctor withholds information from the family, they're going to just go look it up on the Internet. I think a human being should be the source of that information.
Sometimes people don't want to talk about death with their physician, or certain decisions need to be made without their input. When the doctor tells it like it is, it allows family members to decide what they want to do and not do. They can decide if they want aggressive treatment that might prolong life, or choose to stop treatment, which could result in a faster but perhaps more comfortable death. These decisions are part of the new focus on health care which is allowing people to die with some dignity, and leaves families feeling at least somewhat competent in the time of crisis because they know what's being asked of them.
In addition, families should discuss whether or not they want to know the truth if one of them gets in that position. Generally speaking, the family wants to know a little bit more than the terminally ill person. Personally, I want to know the calendar day and time. I'm big on clarity (I have already had all of these discussions with my son so he knows exactly what I do and do not want). However, a lot of people feel negatively about that because they believe it eliminates hope. But either way, my recommendation is that your family should sit down and discuss plans in case someone needs treatment. People freak out about discussing this because they don't want to even think about it, but you should (even with your more mature children in their mid-to-upper teens). Sit and calmly talk about what all the possibilities are and your wishes for each scenario (i.e. "If my brain is no longer connected to reality, I don't want to be here"). You can even leave the option open to have life prolonging treatment for when the time comes.
Remember that everybody else stays behind and has to deal with things after you're gone, so providing clarity about what you want helps everybody deal with feelings of guilt, fear, and anxiety later.
A woman called me a while back whose 92-year-old mother was alert and perky, but she was on perpetual dialysis. She wanted to get off it, call in hospice, and call it a day. Of course her daughter was upset. She was not only losing her mom, but her kids were also going to have to experience death. However, I told her that she had to respect her mother's wishes. I said that hospice is an incredibly moving experience and takes care of everybody in the family, not just the person leaving, and that her mom had decided she had lived a good life and didn't want to be spending her time watching her blood being recycled. She just wanted to go out peacefully, and her daughter needed to honor that.
Posted by Staff at 12:00 AM