Tommie Farrell currently serves as 1st Counselor in the Abilene Texas Stake. He has served as Ward Mission Leader, Elders Quorum President, and Bishop. Favorite callings of his past have been Primary Teacher, Temple Ordinance Worker in Lubbock Texas Temple during the first years in operation and as a Scout Master just prior to his current calling. He has been married to Karen Farrell for 26 years and they have four fantastic children at ages 24, 19, 16 and 12. He has been a physician for 20 years with 15 years of these dedicated completely to the field of Hospice and Palliative Medicine where he gets to care for patients and families with critical illness and end-of-life care. He has served in this area on a State and National level as a member of the Board of the Texas and New Mexico Hospice Organization, plus he was the previous President of the Texas Academy of Palliative Medicine, and currently is the President Elect for the Hospice Medical Director Certification Board.
A global pandemic has reminded us of the fragile nature of life and society. Just as we see that the wartime period of the Nephites leads both to the hardening and softening of hearts, the time of pandemic is revealing fears and questioning as well increase of faith. Trust the Words of our Prophets For those fearing, I encourage trust in the words of our prophets. President Nelson has said “Our Heavenly Father and His Son, Jesus Christ, know us, love us and are watching over us.” And we have heard the testimonies of our Apostles such as Jeffrey R. Holland saying, “When we have conquered this [COVID-19] – and we will”.
As a physician, I have seen the wisdom of the caution the leaders of the Church have used in guiding our activities as well as agree with the promises they have made for the ultimate passing of this current pandemic. We have seen coronavirus behave differently than just about every original model proposed by medical science. How grateful I am that we get the added knowledge that the Lord communicates to our prophets, seers and revelators for our ultimate good.
I am gratefully the death rate of this disease has remained overall low, but its toll has been significant. Though we have been taught that if we are prepared, we shall not fear4, it is natural to fear dying and difficult to fully prepare for it. In this article I would like to offer practical advice to members and leaders on preparing for death and dying. Whether during pandemic times, or during the course of our natural lives, we will have to face dying eventually.
As a hospice and palliative medicine physician, I have spent 18 years helping individuals and families near the time of death. It is a job that allows me the blessing, “to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times”5. I currently spend much of my time in two settings – 1) caring for patients in the Intensive Care Unit (ICU) as well as their families as they make tough choices, and 2) in a clinic with patients receiving cancer treatments. From these experiences I offer my humble recommendations to help you, as leaders, when you may be counseling with someone who is faced with life and death decisions.
As uncomfortable as it is to think about death, not talking about it does not make it easier. It would be akin to being pregnant and deciding to not prepare for the delivery. The unplanned increases anxiety. It is tragic how often I am speaking to families as they agonize over a complex decision and have to say to me, “we don’t know what she wanted l…. we never discussed it.” So make sure you think about what you would like if you were in a critical state of health and let your family know.
As I share the information below, I am not advocating for one path above another. Each of us may have different ideas on this. I am only encouraging you to think about it and communicate it to your family. You may feel you are too young to think about it. Unfortunately, I have cared for the whole range of life with patients who are children, young persons just starting into their adult life, young married persons, those raising children, as well as those who have completed all these milestones.
Most physicians are also uncomfortable about death and may not have all the training on how to discuss death. So they often speak about end of life issues with vague and general terms. And since that feels safer for patients and families they do the same. Due to vague words, in the end the true intent of a persons desires may be very different than what their doctor and family understand what they want. Phrases like, “do everything,” “heroic measures,” and “if it will help me get better,” are not very helpful. Let me explore some various types of decisions you may have to consider if you get very sick and try to help make the vague more specific.
Phrases like “heroic measures” and “aggressive care” sound too noble to pass up. If asked, “Would you want me to do everything to keep you alive?” The only sane answer would be yes. “Why wouldn’t I want to be kept alive?” is the natural thought. But we should think about this more specifically.
Let’s start with the most serious moment you could consider – what would you want done if my heart stops? That is a specific moment. In that moment that your heart is no longer beating, you have died and the race is on to see if restarting it can be done soon enough that your brain has not lost too much oxygen. To do this is not a little thing. It involves chest compressions, electric shocks and then being on a mechanical ventilator with a tube going down your throat into your lungs. If you saw a realistic video of this event you may pause on thinking if you want it done. You may think of how often it works on television shows – up to 75% showing immediate life with no long term consequences. In reality resuscitation works about 37.5% that a person will survive the event and only 19% leaving the hospital alive without having their heart stop again. Often a patient says to me, “Well, if it works then I would want it, but I don’t want to be a vegetable.” Well, as you can see from the statistics above you can’t ever tell it “will work,” and we can’t always tell the outcome prior to starting.
But what we do know is that your baseline health matters. This feels like it should go without saying but a young, active person with no chronic illnesses has a better chance of meaningful recovery than an older, less active person with chronic diseases. We tend to think of our family members as being healthier than they really are as they age. So as much as possible as you discuss this topic try as best as possible to consider what is the health status of the person we are discussing (whether it be yourself or a loved one). For example if a person is over age 75, not going out to a job or traveling, spending much of their day in sitting activities or with any of the diseases that are considered progressive, you should consider chances of recovering from a life ending illness to be very low.
What do I mean by “progressive diseases?” These are those that don’t get better over time but will become worse eventually. The treatments of the physicians are focused on keeping things as good as possible as long as possible. These include heart failure, severe coronary artery disease, chronic obstructive lung disease, renal failure, most of the cancers if they get to stage IV (there are only four stages), and most importantly the chronic neurological diseases of Alzheimer’s dementia and Parkinson’s disease. So in the end, I recommend that you consider the question on whether you would want to be resuscitated if your heart stopped (what we call Full Code) or if you would want to allow yourself to die naturally if your heart stopped (called Do Not Resuscitate) on your level of health.
Other End of Life Considerations
Let’s discuss other decisions you can discuss with your family directly outside of the resuscitation decision.
Let’s consider the scenario that you have an acute critical illness that does not necessarily end your life but places you in need of intensive care. Examples of this could include our recent COVID-19 complication of pneumonia, but includes a host of other items – pneumonia that requires you to be on a ventilator, infection that gets into the blood stream and effects your organs (called sepsis), a sudden heart attack or stroke. As is true with all these illnesses your sickness could be severe but reverses quickly with the right treatment or could overwhelm your body and place you in a state of requiring different machines to keep you alive. These include the ventilator going down your throat to keep your lungs breathing, a dialysis machine to filter your blood to replace your kidneys doing this, and/or feeding tubes placed down to your stomach to pump nutrition to you intestines.
In this state the person will be too sick to tell the medical team what to do and it will be up to the family. They will be asked questions like would you “want to be kept alive,” “give you your best chance,” “help you keep fighting.” These professionals are very good at their jobs and quite often they can keep persons in the worst of health alive. So how do you prepare your family for this scenario. Let them know what level of living you find acceptable and ask your family to go that point only. Here are some levels of treatment you could ask your family to keep you in, in ascending order of how much would be done for you:
- Only do intensive care when the doctors feel like you will get better and back to your previous state of health
- Do intensive care even if requires you be on machines for a longer period of time and know you may need some weeks or months of rehabilitation after
- Do intensive care if you can be kept alive on machines as long as needed and can interact on some level with your family. This would mean you are willing to live on a machine in a nursing home if you can interact with your family through nods, gestures or writing.
- Do intensive care even all you can do is lie there on the machines (this is what many call being a “vegetable”). Your organs are working but you just open your eyes and move some (so you are not brain dead), but you can’t communicate to your family on any level.
Some key facts that may help with this. Most persons in an ICU who are going to recover do so quickly. If the medical team is unable to liberate you off a ventilator within 7 to 10 days then the chances that the more prolonged life support measures will have to be used are higher. This varies from illness to illness and you can ask this question directly to your testing teams. And again, the other fact to remember, is your ability to recover from an intensive care stay is most largely based off your baseline health. It will knock down the health of the strongest but a younger active person will come through with enough reserve to rebuild that strength. A person suffering from debility from one of the progressive illnesses I listed above will have a lower chance of full recovery.
How and Who to Tell
How to communicate your wishes varies from state to state. There are Living Wills, Advanced Directives, and POLST forms based off where you live. Your primary care provider can guide you on this and just by asking you give them the opportunity to know more of your wishes. In many states your family can override your wishes no matter what document you complete, that is why my message is repeating to tell your family. In addition to telling them, ask them if they will be able to keep your wishes. I do have occasions that family members tell me they know their loved one would not want to keep going on the current path, but they can’t bring themselves to keep their stated wishes.
If you worry that could be the case in your family, you can name one person to be your Medical Power of Attorney. This enables that person to make all decisions for you if you become unable to communicate. This can be a family member or a friend. Three things you need in the person you select:
- Someone who really knows your wishes (talk to them)
- Someone who will actually do what you asked
- Someone who won’t be bullied easily by other family members or health care providers who have different opinions
A Practical Example
I know all the above may feel complex. And unfortunately, it is. There is no way to make it truly simple. To help let me use a personal and practical example. After starting the preparation of this article I had the unexpected event of being diagnosed with leukemia. I have had to think about these things directly. I want to share my plans. As I do so let me clarify two things.
- Just because I have picked a path does not make it correct. It is correct for me and someone else may choose a different path that is right by them.
- I could change my mind. We always have the right to change as we go through the experience. It is appropriate to re-evaluate each step of the way.
I have named my wife as my medical power of attorney. I have a backup person who is a doctor friend of mine to help guide her with the medical lingo she may face. I have decided if my heart stops I will be a full code. I am youngish, run regularly, and have no chronic medical illnesses. If I come to the spot that I get sick enough to be on machines I have told my wife to go with the 1st level of care I listed above. I only want treatment if it is clearly going to get me off the machines to a functional level. Because I do enjoy an active life, I don’t want one on machines. In fact, once I am on the machines I have told her my resuscitation level should change to “Do Not Resuscitate” due to my feeling that if I am that sick it is time to let go of that procedure as I believe I will be too sick to be functional after that.
Tips for Leaders
Those familiar with Leading Saints know that being a leader is not limited to those with leadership callings. So, this advice is for anyone who chooses to mourn with and comfort those who stand in need of it. It can be a daunting task. Most of us have not had the experiences to know what to do or say. It requires the gifts of discernment and spiritual guidance. It requires a personal testimony of the Atonement of Jesus Christ. My tips pale in comparison to any promptings you receive from the Holy Ghost. But here are some tips for helping those with a potentially terminal illness or the family dealing with this illness or living after the death.
To help for the context of this list let me share another personal story. My wife and I had a child that died immediately after birth. It was quite a trial but truly most of us will have some type of loss in life. So my advice below couples both years of trying to comfort others as well as our personal experience of being comforted. Some Do’s and Don’ts:
Don’t ⁃ Feel like you have to fix things. Most persons aren’t expecting this from you. They need and desire support and understanding. Ultimately only the Savior’s Atonement can fix any of these things. Even when someone looks at you and says “What do I do?” consider holding their hand and looking them in the eye and saying, “I can’t even imagine what it is like to face this. Whatever you decide I support you and will be there for you and more importantly I trust our Savior will be there for you.”
Do ⁃ Acknowledge how tough things are. It is ok to tell them you imagine this is the worst possible situation and how much you are sincerely aching for them. This is often more helpful than trying to be rosy about everything with the “I’m sure you will beat this” phrase, unless they are directly asking you with help for positive messages.
Don’t ⁃ Say unhelpful platitudes unless they are seeking that very validation. After the death of my child, I was relying on the promises of the Gospel. However, I thought I might have to slap the next person who told me he was in “a better place.” My wife often thought, “Why wouldn’t being in my arms be a better place?” Through grace we learned that these were caring people just not knowing what to say. It is however always appropriate when a grieving person says a hopeful phrase themselves to testify you believe the same.
Do ⁃ Let the Spirit guide you for the unspoken needs. My mom was a good example of this to me. Once when a family needed to travel suddenly to go to a funeral of family member whose passing had been sudden and unexpected, she showed up to the house with a bag and ice chest of snacks and food that would be needed for their young family. She then asked her friend if she could come into the house and get the clothing ready for the children who would need an appropriate outfit ready for the funeral.
Don’t ⁃ Make a person feel that any progression of disease or death came due to a lack of faith. We need to acknowledge that healing is a matter of faith and God’s will. Elder Bednar shares an excellent example of this in his talk, Accepting the Lord’s Will and Timing (August 2016) when he asks a young man prior to a blessing if he had the faith to not be healed.
Do ⁃ Remember the widow and childless. This is a particular area to which I like to be sensitive. Every time that a faithful person shares a testimony in our meetings about the faith that allowed them to overcome their cancer diagnosis or the miracle of the safe birth of a child that an ultrasound predicted a potential birth defect, there may be in the same congregation the widow whose spouse died of cancer or the couple who recently had a miscarriage. Not that the person sharing their testimony is doing anything wrong. Their testimony is valid and most of us who experience loss understand this when we hear these testimonies. But hopefully a ward brother or sister is remembering that person and reaching out to them and saying, “I was thinking about you. I love your faithfulness. Are you doing ok after hearing Sister _____’s testimony?”
Do ⁃ Allow yourself to mourn. Likely if you are consoling another you are dealing with a loss of someone you care about even if at a different or more removed level. Allow the atonement to fill your needs. Lean into your family and friends.
How Wonderful When We Are Resurrected
I am grateful that we chose to come to Earth for this experience to receive these bodies with all their frailties and strengths. How wonderful it will be when “spirit and body shall again reunite“ immortal. Until then, let’s care for them well, use the guidance of the Spirit of God to know when to let them go, and rely on our Savior’s Atonement when they are sick and afflicted.