So things have changed dramatically right in front of us, and I'm looking at end of life care in a different way at the moment.
In practical terms right now that includes hospice team meetings via video, restrictions at nursing and assisted living facilities, screening calls to families before visits, colleagues self-quarantined, and doing projects from home.
It's changing all the time, too. Who knows what it will look like next week?
I've been with colleagues and others on Twitter and frankly thinking about how to care for lots of people who have severe symptoms in serious illness, specifically dyspnea (difficult breathing) and delirium (acute brain dysfunction), and also complicated grief for families and caregivers.
My colleagues and I know how to do this. Our tools are simple. Our method is the essence of nursing - intelligent care.
Hospice in the US got going in the late 70's because community volunteers, activists, and health professionals developed a compassionate alternative to dying alone in the hospital. Money had nothing to do with it, just simple humanity.
We're going to depend on volunteer caregivers and will need community support in so many ways that no one yet has articulated.
Take a look up at the ICU Quick Sheet. The second step in treating patients infected with COVID19 is discussing goals of care (GOC) and triage.
Not everyone who needs a vent is going to want one (goals for care) or get one (triage).
Those are the patients and families we're thinking about. I'll stop here on that one.
Can't get where you're going without a destination, so...
Think About Your Goals for Care
This is the time to get real about advance care planning:
1.Talk with someone you trust about what really matters to you, so they can make the decisions you would make about your treatment, if you don't have the capacity to make them yourself.
Here's Atul Gawande to show us all in just 3 minutes how to have those kinds of conversations. He didn't have a clue either, until he asked his colleague Susan Block for help, and she told him exactly what to do. Smart guy, that Atul.
2. Designate someone you trust as your Health Care (Agent, Proxy, Power of Attorney) in writing using your state's form - though at this point what's to quibble?
Massachusetts has a simple Health Care Proxy (HCP) form backed by law so if you don't know what else to use:
3. Talk with your trusted health provider about whether or not you want Aggressive Treatment ("Do everything!") for the Serious Illness Interstitial Pneumonia.
The ICU Quick Sheet up there is also a guide to Aggressive Treatment for the Serious Illness Interstitial Pneumonia (viral pneumonia), especially intubation (breathing tube) and mechanical ventilation (ventilator, breathing machine) to support damaged lungs and try restoring them to health. It's a hard road ahead. These health care workers know what to do. No hitter bats 1.000
The most serious complications along the way include hypoxia (oxygen too low for life), shock (falling blood pressure) sepsis (blood poisoning, blood infection) leading to damage and organ failure (brain, heart, kidneys, liver). There are machines to replace or support failed kidneys, liver, and heart. It's a hard road ahead. These health care workers know what to do. No hitter bats 1.000
If you have current health conditions, believe you are at heightened risk because of age, or otherwise need to have an open and honest conversation - this is the time.
The Massachusetts Medical Orders for Life Sustaining Treatment (MOLST) is a prescription signed by a physician - MD, physician assistant - PA, or nurse practitioner - NP. It is a medical order based on the patient's choices and decisions regarding Life Sustaining Treatment (Aggressive Treatment). It must be followed by health care professionals, treatment locations, and emergency responders.