Goals of Care
Ask the Tough Questions; Make a Plan and Bring Along a Parachute
Warning! The following post contains aviation analogies stretched beyond any reasonable limits and videos clips of hi-G aerobatic flight solely for the purpose of emphasizing key points about battling brain cancer. We are happiest when we are helping brain cancer patients “fly”, and carving up airspace with the throttle pushed to the firewall.
Travel is a joyous experience for a lot of people. But traveling is also one of the most stressful things that we regularly encounter in life. Whether it is the morning commute or a vacation halfway around the world, unexpected events can alter a journey. The same can be true when life is disrupted by a brain cancer diagnosis. Everything is instantly turned upside down. Taking a deep breath and regaining control of the Journey tests a family’s resolve and cohesion like nothing else.
Experienced travelers quickly learn that contingency plans are absolutely critical. It is unpleasant to anticipate the things that can go wrong, but doing so is a worthwhile exercise that can alleviate stress when the inevitable upsets do occur. The same is true of planning the Journey for a brain cancer patient. We highly recommend that all families conduct a Goals of Care (GoC) conversation regularly throughout their Journey.
Why Are Goals of Care Discussions So Important?
When we board a commercial flight, we hope for a smooth and uneventful hop. Sometimes turbulence does occur, and it can be frightening. The same is true of brain cancer Journeys. They will be bumpy from time-to-time. All oncology treatment plans have Adverse Events (AEs; aka “side effects”) associated with them. It is unavoidable, and the treatments can occasionally be worse than the disease (see here). When setbacks inevitably occur, it is useful or even comforting to refer back to a GoC discussion and plan to guide decision-making during a stressful period.
We meet with hundreds of families in the MissionGBM community, and we can report that those who regularly have sober GoC discussions are also the families who navigate the Journey most successfully. In contrast, those families who cannot bring themselves to talk about GoC often descend into unnecessarily adversarial “debates” that can result in fractured relationships and treatment delays.
Create a GoC Flight Plan and Update It as New Data Presents
GoC plans need not be complex. We advise that families start with the basics, which is typically a clear and unambiguous statement of one’s personalized Priority Objectives:
I want to live as long as possible, but with a Quality of Life (QoL) that is acceptable to me and my family.
I define QoL as being able to (check all that apply): (i) Communicate (speak or write); (ii) Move about with reasonable independence (walk, use a cane/walker, use a wheelchair); (iii) Engage in adult activities and conversations requiring cognitive skills; (iv) Travel; (v) Experience Joy with my family; (vi) Help my family understand that I may elect to terminate my treatments at some point; (vii) Make it clear to my family that they need to respect my decisions; and (viii) any other objectives that one may consider important.
I understand that neurosurgery (NSGY) is likely, but there is a limit to how many procedures that I will endure.
I am willing to accommodate only certain inconveniences in order to extend my life. For example, (a) I will (not) shave my head for treatments; (b) I do (not) accept hospitalizations if necessary to mitigate any treatment-induced AEs that may arise; (c) I am (un)comfortable using adult incontinence products; and (d) I can(not) tolerate significant bouts of treatment-related nausea and vomiting.
I do/do not have an interest in exploring clinical trial participation, and I understand that I may be randomized to the Control (SoC) arm of a study.
I understand that my family members have lives apart from my brain cancer care, and I want them to live their lives as much as possible, even it means that I may not see them as often as I or they may like.
When hospice becomes necessary, I prefer to move to a facility outside of my home versus remain in my home with in-home hospice care.
I want my family to make rational financial decisions surrounding my care.
With the Primary Objectives in place, one is now ready to contact the tower and begin the takeoff roll for one’s Journey. Be advised – Once aloft, unexpected situations will be encountered requiring periodic adjustments to the flight plan.
Caption: After a thorough pre-flight inspection and sortie planning meeting, we roll out for a two-ship sectional takeoff in a World War II vintage P-51D “Mustang” alongside our buddy in a P-40 Warhawk “Flying Tiger”. Revs Up! It’s a beautiful day to fly. (Source: Scott Rakestraw)
What to Do When Things Go Upside Down
When we are planning an aerial combat sortie (with laser designators instead of air-to-air cannons), everyone in the flight group participates in a detailed pre-flight discussion of what may go wrong, and how we plan to recover if “Stuff Happens”. We talk about the Rules of Engagement; how to safely enter and exit an aerial furball (aka “dogfight”); radio communications and backup hand signals; and bailout procedures should something catastrophic happen (we wear parachutes and practice bailing out). We also chat about quickly locating the “Party Bag” in the event that a “Reversal of Fortune” occurs in the middle of a hi-G maneuver (Ewww! It can be hard to see the instrument panel or out of the canopy if one’s lunch suddenly exits).
By analogy, we strongly advise that a brain cancer patient and his/her family do the same regarding the Journey. Some common planning examples are: (i) what should we do if a seizure occurs; (ii) when to call 9-1-1 for emergency help; (iii) to which ER do we want the ambulance to transport us; (iv) how will we quickly communicate an emergent problem to the Neuro-Oncologist and care team; and (v) what is the plan to provide coverage for any children, pets or dependents if an emergency hospitalization is required.
Make a plan and a backup plan. Pack your parachute. As Smokey the Bear says, “Only You can prevent forest fires.”
Caption: A clip from our very first Basic Fighter Combat lesson in July 2001. The warbird is a North American AT-6 “Texan”, which was the advanced fighter trainer for the P-51D “Mustang” during World War II. Video quality is typical for 2001 as opposed to the GoPro HD video files that we create now. (Source: Scott Rakestraw)
Never Leave Your Wingman (Caregiver)
A brain cancer diagnosis affects the whole family. For most families, a primary caregiver will emerge – usually a spouse, partner, parent or adult child. The stress that caregivers experience can be very intense because he/she is both caring for the patient as well as trying to simultaneously manage a whole spectrum of challenging daily tasks (job, household finances, child care, food shopping and prep, cleaning, medical appointments, dealing with insurance companies, etc.). We constantly talk with caregivers and emphasize the critical importance of making time for themselves and continuing to do activities which bring them joy. Easier said than done, we know.
We also advise patients that they must be sensitive to the unique stresses experienced by a caregiver. It is important to recognize and talk about these stresses, and to continually endeavor to maintain psychological balance and personal relationships despite the swings of emotion and treatment setbacks. The worst situations that we see arise when the patient-caregiver relationship deteriorates to the point of being adversarial. Please do not let this happen.
Your caregiver is your Wingman, and s/he always has your “Six” covered. Break that formation at your peril.
Caption: Never leave your Wingman! Having spent an hour ripping it up in an exciting furball, we bring our flight group back for a high speed low pass over the airfield in tight formation. The tower cleared the pattern and advised waiting aircraft on the ramp to “get your phone’s video camera rolling as you’re going to see a rare treat”. The video is recorded from my head-mounted GoPro camera as I fly the P-51D. Do NOT try this without lots of practice. (Source: Scott Rakestraw)
Putting It All Together – Fight’s On!
You have been unexpectedly thrust into the fight of your life. You certainly did NOT want to be in this position, but you are…so now you must take the fight to your brain cancer. Set up your battle plan; assemble your squadron; make sure that your aircraft are fueled and armed with evidence-based weapons. Let your Wingman know that you are all in this together no matter how Hot the furball may get.
You’re ready for this: Bogey on my nose; Angels 8; Four clicks to the Merge; Closing at 400 knots; Master Arm Hot. Fight’s ON!
Onward!
Crazy Idea: If there are any wannabe Fighter Pilots out there in MissionGBM land who have an interest in a “Furball to Fight Brian Cancer” fundraiser for a leading non-profit organization, please send me an email at: missiongbm1@gmail.com. If there is enough interest, we may just put together an event at Fighter Combat International (way too much fun, believe me) and shred the desert sky. Revs Up; Lasers Hot; Inbound to the Merge!
Are you in?