It's shocking... But over and over, the medical establishment is denying people the right to die peacefully or with dignity.
The facts about the end of life are alarming.
Medicare spends more than a quarter of its funding on people in their last 12 months of life. And about 41% of people in their last three months of life receive a "burdensome intervention." These are things like tube feedings, emergency-room visits, and heart shocks.
Where is the comfort... dignity... or even common sense?
People don't need to be admitted repeatedly to the hospital when they're dying or gripped by advanced dementia. It creates a sense of false hope for friends and loved ones and discomfort for the patient. Worse, it's just feeding the hospital's coffers with money it doesn't deserve. I understand that in the heat of the moment it seems like the right thing to do, but that's the point. It doesn't change the outcome. All it does is waste money at the end of a loved one's life.
So this week, when your family is gathered for Thanksgiving... take control of the circumstances surrounding your death. Read these six questions with your friends and family. Talk about the issues and plan for the future. Don't let some cold, faceless hospital dictate how you or your loved ones will spend those last months on Earth.
And if death seems like a remote concern... all the better. You can discuss these six questions now without the anxiety or emotions that come when death seems imminent.
1. Do you and your family (parents, siblings, etc.) have a living will? This document spells out what your wishes are regarding ventilators, heart shocks, and other interventions if you're sick. It's hard to know, but imagine you had dementia, didn't know your spouse's name, and couldn't feed yourself. Would you want extraordinary measures done to keep you alive? Would you want to be treated for pneumonia? Or just allowed to die?
2. Do you have a health care proxy? This is a document that says who you want making decisions for you if you're incapacitated. Talk about it. I've known of families where two kids thought dad wanted everything done to keep him alive, and two siblings thought the exact opposite. Can't have it both ways. Someone will make the decision, and relationships can fracture over it.
Be sure and sit down with your designees and make your wishes clear. I recommend doing it with at least two family members and have them write out your wishes so you're sure they understand.
3. Have you thought about where you want to die? At home? The nursing home? Don't forget about hospice care, which provides pain medication, but nothing else. No treatments, no tests, no interventions in your last months of life and can be given in your home or at a facility equipped to help make you comfortable. This is how I'd like to go – at home with little pain. But everyone's decision is personal. If you expect to care for a loved one through this last stage of life, please ask him or her now.
4. Have you considered nursing homes and assisted living centers? If so, be sure and look at the fine print. When my stepmother and I were moving my dad – who suffered from dementia – into an assisted living home, no one explained the sit-and-pivot rule to us. (To stay at the assisted living home, my dad had to be able to sit up in bed on his own and pivot on his feet on the floor to get in and out of a wheelchair.) We thought a place with a dementia center would naturally be prepared for someone like him. As a result, we kept him home too long to qualify – due to the sit-and-pivot rule – for the sort of care an assisted living center provides... It's a rough way to find out on the day you bring your loved one for admission.
And be sure to look online at the federal government's website on nursing homes: http://www.medicare.gov/NHCompare. The site allows you to compare ratings and locations among thousands of nursing homes. For a U.S. government site, it's surprisingly useful and full of information to help you decide what's best for your situation. My stepmother was able to find a place half the distance from home, but higher-rated than the other choices farther away.
5. What's covered by insurance when someone is dying? Once you or your family member is in a nursing home, who pays for a hospitalization? What will be your out-of-pocket expenses for each major decision? If you had $250,000 to leave to your daughter, but you were in your last year of life, would you want to be treated out of pocket or forgo it and let your child get the money? It doesn't seem like a big deal now. But you and your daughter should talk about it. Imagine if you discovered she felt the exact opposite... you should know these things before you're in the midst of it, and don't have any control to take your time and consider what is best for you.
6. Have you addressed your spirituality? Whatever your beliefs, make them known to your family and loved ones. Do you want your priest coming by? Do you want music? Do you want to give or get forgiveness from anyone? These issues should be discussed if not explicitly planned for. Is there anyone you want to talk to about love... to say the words I love you? Again, all things to talk about.
I hope these six topics open up a dialogue with at least yourself and that today's issue has added a little something to your life. I truly hope that as you contemplate yours or another's mortality now or in the future, you can talk about it safely with friends and loved ones.
Begin the dialogue this week and continue it into the New Year... and then act. Urge your family members to create living wills, health care proxies, and powers of attorney. And do it for yourself, too.
What We're Reading...
*** The costs of end-of-life care aren't the same for everyone... Dementia patients pay more in the last five years of life than patients with other diseases.
*** Medicare will start paying doctors to have advanced-care planning discussions with patients.