Though it may be uncomfortable to talk about such things when we’re relatively healthy, research shows that those who do – live longer, with less anguish, while maintaining a say over their quality of life.
There’s just no getting around it. Eight out of ten of us will have Serious Illness Conversations (SIC) with our doctors and loved ones as we age and encounter advanced illness. There are two exceptions: if we’re among the 15% of people who die suddenly, or if we can no longer talk or think clearly, then a loved one will have to advocate for us.
These conversations are so important and pivotal, that they shape the closing years, months, and days of our lives. In a clinical setting, Serious Illness Conversations tend to be informally structured and are rarely haphazard. What better time to learn about what might be asked of us than right now? By hearing ahead of time what doctors are inclined to ask, provides time to prepare – to think about what matters most, and how you might respond in the face of grave illness.
The Serious Illness Conversation Guide *
The Palliative Care Team at Ariadne Labs has created a Serious Illness Conversation Guide to help clinicians and patients more skillfully navigate these important and challenging conversations.
This guide has proven highly useful in helping people discuss their hopes, fears, and sources of strength during advanced illness. To date, more than 28,000 clinicians have been trained to use the Conversation Guide and more than 300 organizations have implemented it. While designed for clinicians, the guide offers valuable insight to anyone brave enough to read on. Here’s how it often goes.
The clinician normally introduces the purpose of the conversation and asks for permission to proceed.
For example: “I’d like to talk about what lies ahead with your illness and do some thinking in advance about what’s important to you – so I can make sure we provide you with the care you want. Is this okay?”
Your doctor will benefit from hearing what you understand, or already know about your illness. Also, to hear your preferences about how much medical information to share.
“What’s your understanding of where things are with your illness?”
“How much information about what may be ahead with your illness would you like from me?”
Based on your answers thus far, your doctor is likely to share a prognosis.
“I want to share my understanding of where things are with your illness…” Or: “I wish we weren’t in this situation, but I’m worried that time may be as short as _____ (expressed as a range, for example: days to weeks, or weeks to months.)”
Your doctor will likely explore key topics, such as your goals, fears, and acceptable ‘tradeoffs.’
“What are your most important goals if your health situation worsens?”
“What are your biggest fears and worries about your future health?”
“If you become sicker, how much are you willing to go through for the possibility of gaining more time?”
Your doctor will likely summarize, make a recommendation, ask for your feedback, and affirm their commitment.
“I’ve heard you say that _________ is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we _________. How does this plan seem to you?” “I will do everything I can to help you get through this.”
Two Essential Tasks Going Forward
First, to get the care you’d prefer; you need to select an appropriate healthcare agent. Now’s the best time to address this essential chore. Here’s a link to a previous post about selecting a worthy agent.
Secondly, to begin having detailed conversations with your agent about your goals of care. Meaning, what are your concerns and preferences?
What We’re Up Against
Currently, half of all Americans reaching the end of life are brought by ambulance to a hospital emergency department (ED) in the last month of life, seventy-five percent of whom are then admitted for an extended stay.
More than one million emergency calls a year bring these late-stage patients to the hospital, often because their families don’t know what else to do or because they are unwilling to accept that death is fast approaching. Many of these patients and their families are unaware that the end of life is even at hand.
The Hospital is Not a Good Place to Sort These Things Out
Most hospital emergency departments HUM with urgency, and the default mode of aggressive, life-saving treatment. The best way to prepare for such a time, and to minimize the risk of late-stage aggressive treatment – even harmful treatment, begins with earlier conversations between you, your doctor(s), and your loved ones.
The sooner and more often we’re willing to talk about what matters to us – our hopes, fears, and preferences, the more likely that our lives, and our care, will reflect our wishes.
What Barriers Stand in the Way?
For the patient and family member, Serious Illness Communication (SIC) can be new and daunting territory. These important conversations can be awkward and emotionally trying for clinicians as well. Particularly when a clinician’s reluctance to initiate timely conversation postpones the introduction of SIC until late in the course of illness, when few less invasive options remain. Dr. Diane Meier, co-founder of the Center to Advance Palliative Care (CAPC), notes that,
“(Clinicians) are not born knowing how to have these conversations any more than they’re born knowing how to do an appendectomy.”
These conversations require communication skills that need to be learned and practiced. Even then, the process of sharing prognosis, and attending to the emotions that arise, is hard work. The prevailing wisdom is to work together to move SIC ‘upstream.’
Where Do I Start? And With Whom?
Start close to home, by thinking about what matters to you. It helps to plan what you’d like to talk about and with whom.
When you’re ready, begin The Conversation with a loved one or trusted clinician who you’re familiar with. Regardless of who begins the conversation, the most important aspect is that this conversation is forward thinking and fosters shared decision making.
When clinicians ask about their patients’ values and concerns, patients report feeling heard and understood. Here’s a ‘win-win,’ that can reduce unwanted, marginally beneficial treatments, as well as emotional and moral distress – for all concerned.
An Important Form to Have Ready During Serious Illness
Perhaps you already know about the bright pink form known as POLST, short for Physician’s Orders for Life Sustaining Treatment. This is a nationally recognized form, referred to by slightly different names from state to state, that can make a BIG difference in receiving the care you’d prefer during advanced or serious illness.
If your advance directive is sitting in a drawer at home, as thorough and well-crafted as it may be, it WILL NOT be effective in an urgent situation. Many clinicians view the POLST form as an essential and more useful tool to communicate our goals of care. Note well: a hard copy is intended to travel with you from one care setting to the next, in addition to being scanned into your medical record.
Ask your primary care doctor or attending physician at the hospital if completing a POLST would be appropriate. To emergency responders and hospital clinicians, it’s the most recognizable, efficient, and effective way to communicate one’s treatment preferences. Remember that First Responders are bound by law to resuscitate unless a POLST or DNR form is in clear sight. Best practice: Tape a bright copy to your refrigerator or bedroom wall.
You have some homework to do. Take your time and ask for help if need be. You’re not being graded, yet you’ll know when you’ve done a good job, because you’ll likely feel relieved and have more peace of mind. To recap:
- Boldly imagine the time when your health has slipped away.
- What would be most important to you if you needed to be hospitalized?
- Who would be your trusted advocate and agent?
- Talk with them, recruit them, and begin The Conversation.
- During your next annual checkup, include your Primary Care Doctor in the discussion.
- Download a free Advance Directive from your State Health Department or ask your doctor for one. The Five Wishes is my favorite.
- Keep talking about your preferences with those who love you, until it’s almost routine… Until they say, “Thank you, I know, I know…”
- Well Done!!
A Medical Advice Disclaimer
The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.
Next Post: ‘Still Deciding : )
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Until next time, ‘Safe Journeys,
* My sincere gratitude to The Serious Illness Project @ Ariadne Labs, and The Conversation Project for their inspiration and guidance.