Are you prepared for your angel wings

Earning your Angel Wings, are you prepared?

In this time of COVID-19, there have been colleagues, family and friends lost and those that have recovered. During this pandemic and beyond, it is imperative to get your affairs in order. COVID-19 and other health issues don’t wait for the right time.

While we endure this pandemic other illness do not go on hold. We must be ready to get ready. That does not mean buying all the toilet paper you can find.

Cartoon young angel with wings floating to the sky
We never know when we will get our angel wings

I am reflecting back to well over a year ago when there was a post on Facebook (#ThankYouFacebook for keeping us connected) that a former colleague of mine unexpectedly died from a brain hemorrhage.  She was 62 years old and full of life. A few months later, another former colleague met with the same fate. Again, unexpected and this time with a school-aged child. Everyone was surprised and shocked, this was not expected at all. 

We may be faced with tragic accidents, cancer, falls, surgeries that do not turn out well, or a long standing chronic health issues that we have or loved ones have.  Some of these health issues are a bit more predictable as to their outcome and some are not.

We don’t think we are going to die and probably don’t think much about death until someone falls very ill or dies. What if it were us? Do we consider the impact on our family and are we/they prepared?

We may be thinking a bit more about it these days because of COVID-19. If we are not, now is a critical time to have those thoughts and conversations. I do not mean this in a morbid or depressing way, but rather thoughtfully having open and clear conversations with ourselves and our loved ones.

An interesting article appeared in the New England Journal of Medicine by Jeff Drazen, MD.  It was about his brother and titled “Life Lessons from Paul in the Face of Death.”  Dr. Drazen’s brother was 64 and diagnosed with state IV colon cancer with spread. His brother, a rabbi was also a teacher. He had 3 teaching moments he shared in the 2-year journey between diagnosis and death, they were so poignant that I wanted to share.  They are:

3 Teaching Moments

  • Look back to learn how to live forward.  He encouraged his family to be screened for cancer and told his story to help teach others to not fear screening for colon cancer.
  • Do your job. He kept doing and engaging in the work he loved.
  • Have a goal. This could be completing a bucket list items, looking forward to a wedding, birth, or graduation.
Notebook with 1. Dream, 2. Set goal, 3. Action
Do you have a bucket list?

Your bucket list

Dr. VJ Periyakoil has taken a slightly different, but similar approach to the subject of death. The article, published in the Journal of Palliative Medicine talks about bucket lists and how they can help people adopt healthy behaviors.  The article sites the bucket list themes as including a personal goal (such as running a marathon), life milestones, finances and quality time.

Dr. Periyakoil encourages people to WRITE IT DOWN.  It is important that we know what we want to accomplish in the time we have.  It can also assist your healthcare provide to understand and guide treatment options.

We don’t know how long we have, but waiting until “later” or “when I retire” may never get us pointed in the direction of fulfillment. We also need to communicate our wishes to loved ones and our healthcare providers.

What’s on your bucket list?

Write it down and let everyone know.  Below is a template from Dr. V.J. Periyakoil, Clinical Associate Professor at Stanford University and expert in geriatrics and palliative care.

Here is an example of a letter you can draft to your doctor. The link to her information is below in the references as well as a link that provides information on advanced directives.

What matters most to me at the end of my life is….

A letter to your doctor

Dear Doctor,

What matters most to me at the end of my life…(fill this in)

I realize how important it is that I communicate my wishes to you and my family. You may find it awkward to talk to me about my end-­‐of-­‐life wishes or you may feel that it is too early for me to have this conversation.

So I am writing this letter to clarify what matters most to me. The things that  matters most to me are: (list your preferences). Here are some examples: being at home, doing gardening, going to church, playing with my grandchildren).

My important future life milestones are…

My important future life milestones are (fill in the blank). Here are some examples: my xx wedding anniversary, my grandson high school graduation, birth of my granddaughter).

Here is how I/we prefer to handle bad news in my family (fill in the blank). Here are some examples: We talk openly about it, we shield the children from it, we do not like to talk about it).

Here is how I/we make medical decisions in our family (fill in the blank). Examples: I make the decision myself, my entire family has to agree on major decisions about me, my daughter who is a nurse makes the decisions, etc.).

Here is who I want making medical decisions for me when I am not able to make my own decisions  (fill in the blank).

What I DO NOT want at the end of my life is (fill in the blank or use an advance directive), examples: I do not want to be on a breathing machine, I do not want artificial liquid feeding, I do not want dialysis, I do not want to spend my last days in a hospital, I do not want to die at home, other.

What I DO WANT at the end of life is (fill in the blank) Here are some examples: I want to be pain free, I want to spend my the last days at home,  I want you to help me die gently and naturally, I want hospice care at a facility or at home. If my pain and distress are difficult to control, please sedate me (make with sleep with sleep medicines) even if this means that I may die sooner.

What to do when my family wants you to do something different than what I want for myself? I am asking you to show them this letter and guide my family to follow my wishes.  

Other information you want to convey (fill in the blank).

Please scan this letter into my medical records in a place where your colleagues can read this and be guided by it. I thank you doctor for listening to me now and for the future work you are about to do guided by what matters most to me. Your grateful patient, YOUR NAME

Have a conversation with your family, so they know your wishes.

Now for the hard discussions. Take this time while you are home and have a conversation with your partner and family. There are three main areas if something happens quickly and you cannot speak for yourself.  They are:

Written "my last will", with hand and pen
Share your wishes with others

3 key items you need others to know

  1. Name and document the person that will make medical decisions for you if you are unable.
  2. Discuss your values and wishes. If you cannot speak for yourself, the person you designated to make decisions may be asked your wishes by the healthcare providers.  These may be life altering decisions. In the case of today’s pandemic your designee make be asked if you want to have a breathing tube, how you prioritize comfort over aggressive care, even if it meant a shorter life. Knowing your values and beliefs, communicating them clearly to the person designated to make your decisions will take the burden and uncertainty off that person and assist him/her to make the best decision on your behalf.
  3. Decide on a resuscitate or do not resuscitate (DNR) order.  This involving chest compressions and ventilator support when a person’s heart or breathing stops. Often, if the heart stops, beginning CPR can be lifesaving and bring someone back to life, so this decision should be made carefully.

My learning as I reflect on life and death during this time of COVID-19

The learning for me was to make the best use possible of our “healthy time.”  Because for many of us we don’t know how much time that is – it might be only today, it might be 20-30 years or more.  The lessons learned are to make the most of today and every day.

What are your action items?

  • Write down and actually do plan and those bucket list items
  • Write or update your will
  • Think about and update your advanced directives
  • Get your house in order
  • Let others know

You never know what tomorrow may bring

References

Life Lessons from Paul in the Face of Death, Jeffrey M. Drazen, M.D.  The New England Journal of Medicine

https://www.nejm.org/doi/full/10.1056/NEJMp1808695

Dr. VJ Periyakoil’s work

http://med.stanford.edu/letter/letters-in-other-languages.html

‘Before I Die’: Common Items on a Bucket List,”   Vyjeyanthi Periyakoil, MD, Eric Neri, and Helena Kraemer, PhD, Journal of Palliative Care, Feb 8, 2018

Get your affairs in order, COVID-19 won’t wait. Harvard Health Publishing.  Links for Advanced Directives, Difficult Conversations, etc.

https://bit.ly/2KG2X6u

Getting Your House in Order the Swedish Way

https://lifehacker.com/you-must-get-started-on-your-swedish-death-cleaning-1819370181

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Sandi Feaster

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