In my next life, I want to come back as Dr. Kathy Selvaggi, the palliative care doctor who appears in a new Frontline documentary series about how our health-care system handles end-of-life care. I think we should all idolize clinicians who escort people to and from life — midwives, labor and delivery nurses on the one hand. Hospice nurses, chaplains, and palliative care physicians, on the other.
Dr. Kathy Selvaggi and Dr. Atul Gawande (author of Being Mortal, the book on which the Frontline series is based) both say that it is really, really hard coming to the realization you or a loved one is dying. They tell us that, for most people, when it comes to dying: Fear Rules.
But Dr. Gawande points out that doctors unwittingly feed the fear. They do this through a completely understandable, but utterly ineffective, tactic for dealing with fear: Denial. Your Dad could be standing right at the pearly gates, shaking hands with Saint Peter, and there’s a good chance his doctor will still promise your Mom he will do everything he can to get your Dad home in time for Christmas.
The consequences of this fear-and-denial cocktail are twofold: First, it results in an unplanned death. And unplanned deaths usually default to heroic life-prolonging efforts, which are rarely what anyone wants; Second, it denies the patient the one thing that alleviates fear – facing what scares you. (The Buddhists are crystal clear on this point and I agree with them).
Our denial- and fear-based, prolong-life-at-any-cost health care system gives us only one thing – more time before death. That’s it. Maybe it’s worth asking whether your mom needs more TIME. Or, whether she really needs a better LIFE during the time that is remaining. And, what constitutes a better life? In answering these questions we receive the gift that death offers, but fear of death denies us: meaning.
Unfortunately, very few of us are walking around with the conscious understanding that death can come at any time and that our most important pursuit should be a life as full of meaning and depth as possible. I, for one, am kinda bad at this whole conscious living thing. Usually, I am just trying to remember to take my son to basketball practice.
Maybe it’s unfair to ask doctors to help us determine what will be most meaningful as we near the end of life. But they should have the courage to tell us truthfully what to expect from our bodies, so we in turn can get our ducks in order as soon as possible. We need full information from them about the consequences of decisions to prolong life.
Many doctors are trying to change the culture of their profession and the hospitals where they practice. However, as that change is taking hold, I’d advise the following three things in order to help your mom or dad find meaning instead of fear.
Before I share these three insights, I also want to mention we daughters participate in a huge amount of our own denial in response to fear. Right? We struggle to accept that our parents will actually die… but this mindset is how we get caught off-guard. So, I am begging you — pleading with you — even if your 75-year-old parent ran a marathon or jetted off to Paris last week… please take the following advice:
In the recently published book, The Conversation, by Dr. Angelo E. Volandes, he stresses that doctors are going to have an easier time staying out of fear and denial territory if they know what matters to your mom and dad. Although doctors may not think to ask these types of questions, it is important for you to pursue them yourself so that you can share with doctors what is most important to your parents.
Dr. Volandes says you don’t have to march up to your parents and ask them how they want to die, but you can start with positive questions about what your parents enjoy doing, what they look forward to, what is the best part of their day, etc.
These questions are the warm-up for the harder questions that importantly will inform end-of-life care, such as how much they want to avoid certain symptoms, or what frightens them most about needing medical care. It can even be helpful to record the conversation with video or audio, and, of course, it can also be helpful to remind your parents that you love them.
Get it in Writing…
I am a huge fan of new online registries for advance directives. Two I like are www.mydirectives.com and www.everplans.com. Both companies have spent a lot of time and effort making their websites easy to use, and they provide a lot of information. A third great resource is www.getpalliativecare.org.
It is important to get in writing your parents’ wishes about what they want and don’t want, particularly about various forms of life-extending care. You not only want it in writing, but you want it on file with the doctor and hospital, and you want it at home in an obvious place, or else you run the risk that in an emergency the instructions will be overlooked.
One of the things I find striking in Dr. Volandes’ book is how helpful it is for his patients to understand and visualize life-prolonging interventions. Dr. Volandes has found that patients feel much better informed to make end-of-life decisions after touring the ICU, for example — where they can see ventilators, and other machines in action. So, while I am supportive of anyone’s decision to pursue life-prolonging care — if we are talking about someone very old and frail — I’d want you to make sure everyone understands what this really means.
Preparing to Challenge Authority…
Unless you have the unbelievable good fortune to have Dr. Selvaggi as your personal guide, you could end up having adversarial conversations with doctors and hospital staff at some point.
You may have to ask questions many different ways to get answers in support of your family’s wishes. You might have to get directly in the face of someone who works at a hospital, and be ready to tell the doctors and hospital staff, very strongly, what your parent wants. I have a friend whose mom’s advance directives were on file, and yet she still had to stop a nurse from performing a procedure her mother had clearly stated she didn’t want. Another person whom I know had to stand up to an insensitive ICU doctor and outright take her parent home against his advice.
Some of us (ahem) have just the teensiest bit of a problem displeasing authority figures, making other people uncomfortable, or being perceived as being unpleasant.
And, we just have to get over it.
Ask the clinicians to tell you honestly about the course of illness. Tell them you do not want to be given false hope, and you are ready to make decisions based on the best information possible.
Most of all, recognize how hard this is. As Glennon Doyle of the website Momastery says, it’s beautiful and brutal, “brutiful.”
The only failure is putting fear in charge.
There is a lot we can learn from each other in facing our parents’ illnesses and end-of-life decisions. I would really love to hear about your experiences so please share your comments below.