People living with serious medical conditions often spend a lot of time in hospitals. As their illness progresses, the number of hospital visits and the amount of time they spend in the hospital may increase. With each stay, the amount of stress, uncertainty, and even fear that patients and their loved ones feel may increase, too.
At each admission, hospitals are required to ask patients
and their families about advance directives. These are legal documents that specify
two main things that hospital staff and physicians need to know:
- Who has the authority to make medical decisions for the patient if they’re unable to do so for themselves?
- What type of care does the patient want to receive or avoid?
When seriously ill patients arrive for admission without advance directives, they’re often asked to initiate and complete the advance care planning process in the hospital. The intention is good—to give patients and families a voice in their care. However, the hospital setting is not ideal for the advance care planning process.
The advance care planning process in the hospital: stressors, distractions, confusion
While it’s important to ask hospital patients about their care goals and preferences, admission is stressful even without adding major care decisions to the process. In my two decades of experience providing advance care planning (ACP) to patients and families, it’s clear to me that talking through these issues is easier and more effective before—not during—a hospitalization.
We know that people make decisions during a hospital stay
differently than they do at home in a “steady state.” That’s in part because
patients may be in physical and emotional distress that makes it hard to think
clearly. It’s also because the hospital environment is effective for delivering
care but not for fostering contemplation.
Imagine trying to make major decisions like this:
New specialists are coming to see you to render an opinion.
You may have more than 20 strangers per day coming in and
out of your room, disrupting your sleep, peppering you with questions that seem
unrelated to why you might have terrible back pain or difficulty breathing.
The familiar faces you know from your regular clinic or doctor’s
office are often absent.
Family members may be at work or otherwise absent during the
day—when most of the information you need to make decisions is coming at you in
a fashion that is too fast and too technical for you to use.
How can someone possibly make thoughtful decisions about
their future under these circumstances?
Now imagine a different way.
The advance care planning process at home, before the hospital
Consider how care would look if we started these
conversations from the time of diagnosis. What if each seriously ill person and
their family had ongoing education and discussions about the state of their
illness and their goals?
What if people had time to digest the information they receive
over days, weeks, or months before an inevitable hospitalization? They could use
that time to reflect, pray, discuss, or process the information in a way that
is most beneficial for them.
How would family members feel if there was time for them to
be consulted, involved, and recognized as an important part of their loved
ones’ care before a hospitalization? Instead of starting the care conversation
and working out differences of opinion during a hospital stay, they could spend
quality time together.
Would ACP before hospitalization change the degree of stress,
confusion, and conflict many seriously ill people and their families face?
Absolutely! This is something I’ve seen firsthand during 20 years of ACP work.
And scientific studies strongly support the benefits of ACP before there’s a
To reach its full potential to improve the quality of patient care and the quality of life for seriously ill people, ACP needs to happen early, when people are in a steady-state and have time to think through their decisions.
If we can achieve early ACP as a society, hospitalizations
can be less stressful and generate less conflict for seriously ill people and
their families. By supporting them with quality care and alleviating some of
their stress during the time they have together, we can deliver benefits that
go beyond the hospital setting.
Contact us if you’d like to learn more about how Iris helps industry-leading health plans, ACOs, and large medical groups to provide early, accessible advance care planning services for their members and patients.