Think about it for a moment… What could be more important? Particularly if you were in pain and living with serious illness — perhaps even a life threatening illness.
I have good news. Recently, the Centers for Medicare and Medicaid Services (CMS) have agreed to include as a standard measure of patient care, the question, “Over the past two days, how much have you felt heard and understood by the Dr’s, Nurses and hospital staff?” The multiple choice answers: “Completely / Quite a bit / Moderately / Slightly / Not at all.”
After two years of discussion, and extensive evidence-based testing, this new patient-reported quality measure “Feeling Heard and Understood,” has successfully made it through the National Quality Forum (NQF), and has become a catalyst and benchmark of quality care from coast to coast.
This is no small thing. Here’s why. We’ve Measured quantity of care during serious illness for quite a while. For example: length of stay, time in the ICU, the rate of readmission within 30 days, etc. No doubt these are important.
However, when clinicians know that their patients will be asked about quality of care, it can be a game changer. Clinicians are asking new questions, and actually listening to the answers! The intended outcome: patient care stands to become more aligned with patient and family wishes.
The quality of care during serious illness is directly linked to the quality of communication between patient, family, and clinician. This quality of attentive care has been modeled most consistently by hospice and palliative care workers over the past fifty years. Today, more clinicians are asking better questions, listening more carefully, and responding to their patients’ non-medical concerns.
More doctors are learning to ask the North Star questions, “What’s most important to you right now?” and “How can I help?” In addition, more clinicians are genuinely expressing, through verbal and non-verbal messaging, “I’m in your corner.” These changes are significant and have been a long time in coming. Most importantly, I believe they’re patient led, and are being embraced and standardized by a new generation of clinicians AND patients.
A Generation Comes of Age
As the boomers continue to age, approximately 10,000 of us are turning sixty-five every day.
The growing demand for palliative care already exceeds the current supply of specialty-trained doctors, nurses, and social workers. The current aim is to recruit and train more palliative specialists while advocating for palliative care’s core principles to be embraced by other disciplines, including spiritual care.
The most basic principles: to offer one’s undivided attention, to meet patients where they are, and to perceive and acknowledge what’s most important to them.
Our end-of-life culture is changing, and not a moment too soon. The baby boomers are uniquely suited to pick up this banner of change. Guidance lies in the wisdom attributed to Sir Frances Bacon, “Knowledge is power!” Asking good questions of our doctors and nurses and being better informed, can make a world of difference in understanding our options and choosing how best to proceed.
Talking with doctors can be intimidating, but an essential shift takes place as we learn to see our doctors as consultants, rather than authority figures. It’s important to ask our doctors for their complete honesty and to understand the trade-off (benefits vs. burdens) of additional treatment. Then shared decision-making becomes a possibility.
Today’s clinicians are highly knowledgeable and tightly scheduled, yet usually beneath the white coat is a human being with a caring heart. Most clinicians, particularly in the palliative care field, are allowing conversations to be less hurried, and more patient and family centered. One key: listen well, and when it’s time to ask questions, be prepared and brave enough to go to the marrow. Hopefully your doctors will follow suit.
The Key: A Willingness to Consider our Mortality and Goals of Care
Please note well: The responsibility for feeling heard and understood does not start with our doctors. It begins with us, and with a willingness to face and gradually accept our mortality.
Extensive evidence confirms that when patients are willing to reflect on end-of-life, and encouraged to communicate their values, preferences, and priorities, then their quality of care AND quality of life are directly affected.
‘Not quick and easy, but doable… I’ve seen and experienced it in my own family and in many others’. But it doesn’t just happen, it takes forethought, planning, advocacy, and loving follow through. Family communication and quality end-of-life care go hand in hand.
People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come — and escape a warehoused oblivion that few really want.
— Dr. Atul Gawande
The Work that Lies Ahead
Outside of the palliative care field, I’m told that many physicians feel inadequately trained to initiate discussions about advanced or life-limiting illness. It seems that clinicians fear undermining the patient’s hope as well as being subjected to a patient’s strong emotions.
In a large study of patients with metastatic lung and colon cancer, the first conversation about end-of-life care took place an average of thirty-three days before death. Unfortunately, that’s five months after the option of hospice care could have been offered and considered.
Numerous healthcare advocacy groups are working hard to move these essential conversations upstream. The palliative care team at Ariadne Labs have created a “Serious Illness Conversation Guide,” and “What Matters To Me,” workbook, to help clinicians and patients more skillfully navigate these important and often challenging conversations.
These tools are proving highly useful in helping people discuss their hopes, fears, and sources of strength during advanced illness. To date, more than 13,500 clinicians have been trained to use the Conversation Guide and more than 300 organizations have implemented it.
Having Our Own Say
I invite you to “fast forward” to the closing chapters of your life and to imagine what would matter most to you. Where would you be? Who would be nearby? Imagine that you have a say in how it will go. You do. In fact, your willingness to think about this ahead of time, and to express your preferences to those you trust is an intrepid approach. It’s also the most straightforward way to alleviate undue suffering.
Over the next twenty years, seventy million boomers will be encountering the life and death issues mentioned above. The cumulative impact of this generation’s choices, often referred to as a Silver Tsunami, will land on healthcare’s shore, irrevocably altering the landscape, and redefine business as usual.
The Bottom Line
While it’s hard to talk about one’s death, it’s unkind to leave a spouse, a child, or a loved one in a position of uncertainty about something so important. Too many people die in a way they would never want, simply because they didn’t talk with the right person about what they’d want.
The survivors’ guilt that can result from not knowing and then questioning whether we made the right decisions is a cruel inheritance.
The best time to discuss our fears and wishes is sooner than later. “Let’s wait and see” is not a winning strategy. Please don’t wait until a crisis arises. The hospital is perhaps the least desirable place to have such a conversation. The institution hums with urgency, distress, and the overarching bias of providing additional treatment. Under this gravitational field, it’s extremely difficult to discriminate and choose between various medical options, let alone to opt out.
The palliative care model is our healthcare system’s moral compass. This discipline is a brilliant and well-measured response to a pressing and relentless human need to find meaning amidst the ravages of advanced illness. Palliative care is, in fact, the mature fruition of the hospice pioneers’ vision to attend more compassionately to the whole person and to “total pain,” that which goes beyond the physical. Let’s keep talking!
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.