The Spirit Moves In Wondrous Ways

This is a continuation of my previous post on March 1, 2024; a link to that post is provided here:

We Need To Talk – Part I

To illustrate some of the points brought up in that post about Advanced Directives and end-of-life decision making, let’s consider the following case study. 

This scenario is based on an actual situation I encountered while working as a hospital Chaplain providing support to a patient and his family.

Scenario (in ICU meeting room with family):

A male patient in his late-70’s with stage four metastatic lung cancer; patient has become septic, is intubated (breathing tube), not awake/alert, and is currently not strong enough to continue chemotherapy.  His family has gathered to discuss the available options regarding his care and the question going around the room was, “What do we do now?”

Family members present:

1.)  Wife of patient, married 50+ years; she is frightened and looks to their sons to make the medical decisions.

2.)  Oldest son, early 50’s; he is the healthcare proxy, taking it all in, he trying to be objective.

3.)  Younger son, late 40’s; he is vocal about doing everything possible medically for their father.

4.)  Youngest daughter, mid 40’s; she mostly expresses concern about mom.

5.)  Grandson (son of the oldest son), mid 20’s is quiet and teary eyed; as the oldest grandchild he has always been very close to his grandpa (patient).

6.)  Aunt/Sister-in-law (sister of the patient), mid-70’s; she is a breast cancer survivor, thinks of her brother as a fighter, but hates seeing him suffer.

God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

– 2 Corinthians 1:3-4

Critical Issues To Consider:

There was no Advanced Directive in place for the patient.  The family is unclear on the medical treatment options still open, with some family members saying, “He’s been a fighter all his life and not ready to give up.” 

There is disagreement in the family about starting a feeding tube because that is something the patient had specifically said he never wanted (“no machines or feeding tubes”). Yet the decision to intubate happened so fast no one really thought about it until after it was done. 

The oldest son wants to honor dad’s wishes and is feeling a little unsure (guilty?) about the breathing tube decision. The younger son does not want to give up yet, saying, “Let’s get dad stronger so he can start chemo again, he needs that breathing tube and to be fed in order to get stronger”.  Their daughter is silent with her opinion, and is staying close to mom.  His wife keeps repeating, “I can’t believe it; he seemed fine just two days ago, and he’s always bounced back in the past.”  The aunt/sister is wrestling with what she thinks her brother would want and trying to keep respectful to her brother’s family and their wishes.  The grandson seems overwhelmed by it all. 

What is clear is their shared love for the patient.

Tomorrow we do not know, but today and love we know well.

– Rudyard Kipling (from Without The Benefit Of Clergy)

So, now, what do they do?  Put yourself in one of these roles, perhaps one you can identify with; what would you do?

It’s hard to know the “right” and “wrong” in these situations; but as a guiding light I’ve always thought any decision born from a place of deep and abiding love cannot be wrong.

In peace I will both lie down and sleep; for you alone, O Lord, make me dwell in safety.

– Psalm 4:8

Perhaps the most important part of any Advanced Directive is empowering the person (or persons) who will make those medical decisions for you if/when you are unable to do that for yourself.  Because it is prepared in advance it cannot always anticipate every situation or decision that may be faced.  That is why appointing a Healthcare Proxy is so important; someone who knows you and ideally to whom you have expressed your desires concerning treatments. And, importantly, is willing and able to make those decisions on your behalf.

In addition to naming them in the document, it is very important to start by discerning for yourself what would matter most to you at the end of life.  Then equip those who will act on your behalf by having open communication and dialogue with them clarifying your wishes in different scenarios.  It is also important to understand if they have any concerns if/when making those decisions. Getting into hopes and fears from both perspectives can be touchy, but it will be enlightening and very helpful. 

Yes, it can be difficult and a little too easy to avoid, but it will be time well spent. I’ve also witnessed those discussions serving as a path to open the conversation into other areas previously avoided. 

“We need to talk” … try it with someone you love. 

Behold, the dwelling of God is with men. He will dwell with them, and they shall be his people, and God himself will be with them; he will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning nor crying nor pain any more, for the former things have passed away.

– Revelation 21:3-4

Reflection questions:

1. If you role-played in the case study given above, take a moment and put yourself in a different role, perhaps the one you least identify with; does your perspective change?  If so, how?  Now put yourself in the place of the patient; anything change?
2. Take a look at the following resource link from the CMDA (Christian Medical & Dental Association) Statement on Advance Directives.  Consider the Biblical reference section on formulating and applying Advance Directives and consider what the “tension between viewing death as an enemy and as a defeated enemy through Christ” means to you. https://cmda.org/article/cmda-statement-advance-directives/
3. Note: Physician Orders for Life‐Sustaining Treatment (POLST) is a standardized medical order form that indicates which specific treatments, such as a ventilator or feeding tube, a seriously ill patient does or does not want. Unlike a health care directive, a POLST form is signed by the patient and physician and is intended to serve as medical orders that move with the patient across settings of care. Most states now have adopted POLST; the following website provides links to POLST information and forms for each state: https://polst.org/state-polst-programs/
4. The following link is a resource dedicated to helping make end of life care conversations a little easier.  Check out the Go Wish card game; there is a video link on their site that demonstrates its use and there is even a link to try it online. https://codaalliance.org/go-wish-game

Scripture References

2 Corinthians 1:3-4    Psalm 4:8    Revelation 21:3-4