Dear Dr. K: "In my written instructions for family and caregivers I’ve stated: "If I'm living, let me live. If I'm dying, let me die." Is this enough? I’d appreciate some "informed advice" on this, with alternate suggestions."
Let me start by congratulating you on having taken some very important steps that I wish all my patients would complete! First, you’ve thought ahead to a time when your caregivers may have to make medical decisions on your behalf. Second, you’ve made the effort to document your wishes; written information in an advance directive or living will can be very helpful to all involved when a crisis hits.
The trouble, however, is that your instructions may be hard to follow. That’s because in advanced illness, living and dying often look more like a spectrum, where one slowly shades into the other, rather than like two distinct states that are easy to tell apart. Someone who's growing steadily weaker from advanced cancer, for instance, is both living and dying.
To further complicate matters, modern medicine now allows doctors to slow down, or even occasionally reverse, the dying process. For one of my very old patients with advanced cancer, IV antibiotics and special blood pressure medicines were able to reverse a raging infection that would’ve killed him within a few days. In other cases, by doing CPR and zapping a person with a defibrillator, we can sometimes bring a stopped heart back to beating (although in frail older people, this only rarely leads to eventual full recovery).
That’s why instructions that depend on whether a person is “dying” are tricky to follow. Does “dying” mean likely to die within a year or two? Within months? Within days? And reasonable people can have different opinions as to whether potentially life-saving interventions (such as breathing machines, dialysis, or defibrillation) would provide benefit, or cause too much burden.
So what’s better? Clearer instructions that specify what kind of care a person would prefer in the event of certain common medical emergencies.
My prescription for caregivers:
Talk to your loved one while he or she can still express wishes. Here are two particular scenarios that I try to discuss with every patient:
• What if you were found with no pulse and not breathing? “Sounds like that would mean it’s my time to go,” a patient once replied. In fact, many of my older patients conclude this sounds like the quick and natural death that they’ve previously told me they’d prefer. In this case, we often fill out a POLST, or a pre-hospital do-not-resuscitate (DNR) order.
• How would you feel about life-support if you were so sick that you might die very soon? I get all kinds of answers after discussing this scenario with my patients. Some, having seen a spouse or other loved one on life support, have a strong preference against intensive care, and say they’d rather be kept comfortable as they die. More commonly however, I find that people are open to life-support, although most don’t want to stay on it for a long time if there’s little chance of improvement.
Realize that preferences change; what one wants at age 70, when still walking and with a sharp mind, might be different from preferences at age 90, if the same person has become frail or developed dementia. So review preferences and instructions every year or two, or whenever there’s a major new diagnosis or change in health status. It’s also a good idea to have a primary care doctor review these preferences with your loved one, so they can be noted in his or her chart.
I have recently completed some "Adult" resolutions in 2012 (I am 52 years old); included revising my will, granting POA; and having a very specific and detailed Medical proxy Form w/ what I want and do not want for myself. I truly wish that my Father (who passed away 1/2010) who told us "no heroic measures", was MORE specific with his wishes. He did not "Die with Dignity", instead my Mother opted to have an external pacemaker installed and had him placed on a ventilator for several weeks. She was indignant that the supportive hospital staff and doctors told her that "this was the best your husband can be" and that he was not going to improve. I was horrified about the ventilator situation, and when I visited for the final time, my Father looked like a science experiment (I myself am a chemist and have spent many years working in labs; including hospital ones). I I guess the point that I am trying to make, is let friends and family know what your specific wishes are and choose a Medical Proxy that will see them thru . Thanks for letting me comment:)
AndyC, you stated what I was going to suggest. Hospice (at least mine) will mail up to 3 copies to you at no cost to you. I know I am having a hard time filling it out for myself. My husband is terminally ill, and I feel that, though he won't admit it, he is beginning the slide downhill. He was told in 2000 when the terminal disease was found that he would live 10 to 15 more years, but that was just a guess. Since then, things have drastically changed and the stress on him is worse. He now states he won't live more than another 5 years (which would put him in the life sentence zone). I keep telling him he will outlive all of us. He is searching now to make sure he has done something with his life. He has told me most of what he wants but I wish he would write it down. I will have to decide do I stay away from my family (I'm the youngest) or do I move as hubby & I plan even if he is gone and just make sure a lawyer or new friend know about the booklet for me.
Five Wishes has a great online tools as well. You can find it at http://www.agingwithdignity.org
Many, many people use our Five Wishes advance directive, of which there are 15 million copies in national circulation. Unlike the state forms, Five Wishes is easy to understand and use and also deals with personal, family and spiritual issues in addition to medical and legal ones. Every person age 18 and older should have an advance directive. --Paul Malley, President, Aging with Dignity, a national non-profit organization.