Questions and Answers - Introduction:

The following is a compilation of questions we received during, and since, our 2023 Adult Lenten Series on Death and Dying. We have divided these questions into four sections. The first section is “Questions With Answers.” For each of these questions, we have tried to provide answers where possible or point to resources for additional information.

The second section is “Questions That Must Be Pondered.” Our invitation is to honor and ponder these questions, and we have provided some possible ways of living these questions now.  May each of us “live along some distant day into the answers” that are truest for us.

The third section is “Questions We Have Received But Not Yet Processed”. We want to honor the fact that you have asked us these questions, and let you know that we have not yet had the opportunity to move them into one of the other two sections. We will work on them as we are able.

The fourth section is “Questions Pertaining to Financial and Estate Planning”. These questions are, quite frankly, beyond our area of expertise. Matthew Meuli, Attorney/Counselor of Meuli Law Office, PC - Estate & Business Planning Counsel, the attorney who graciously sat in on our sessions and offered invaluable information, answers them HERE. And you may also consult these documents for further help: Colorado Bar Association Estate Planning Flyer and Probate in Colorado Flyer.

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All responses and opinions reflect our personal perspective and are not representative of the opinion of the Episcopal Church, or even St. Paul’s, at large. For all topics, we have striven to provide a good balance of neutral information, our own heartfelt recommendations, and the freedom and encouragement to choose what’s right for you. 

Contributors to this Q&A are designated by initials: 

AA: Amy Agape, PhD (Theology and Thanatology), Hospice & Hospital Chaplain

ESH: Elaine Hild, PhD (Musicology), Certified Music Practitioner

AD: Alex Donovan, MFA (Poetry), Board Certified Chaplain (Hospice, Hospital, Corporate)

FSG: The Rev. Felicia SmithGraybeal, MDiv, St. Paul’s rector

Questions with Answers:

Medical Decision Making and Advanced Care Planning 

I have always thought that my death should be handled in a way that the living – those who loved me – would feel good about. Is that not important?

Yes! We’re so glad you asked. We (Amy, Elaine, Felicia and I) all believe strongly that one of the main goals of advanced care planning is to help family members have an experience of your final days that they can be proud of. Part of that means empowering them to know how best to honor you—especially if you’re not able to speak for yourself at some point in your medical journey. Early preparations and brave conversations can help family have what we call a ”less complicated” grief journey. (They will, of course, still miss you!!) - AD

As a business owner, I have learned that it is much better to work with a business plan or a financial plan. Should someone also have a written plan for retirement or even a written death plan?

We love this question. Yes, a written death plan is a great idea. And we see this having several parts: 1) a plan that designates your chosen medical agent, should you no longer be able to speak for yourself (“Medical Power of Attorney”), 2) a living will, which designates what treatment options you do and do not want for yourself), and 3) specific wishes for your final days: where you would you want to be? Who would you want to be there? Are things like music, or aromatherapy, or prayer, important to you? We strongly believe that the conversations you have with your chosen agent—and ideally your entire family—are more important than the documents themselves, with the exception of the MDPOA form, which gives someone legal standing to act on your behalf. We also know that life never goes exactly according to plan. But the more we can help our families not have to guess what we would want, and also be united with one another, the easier it will be for them to simply spend meaningful time with you when the end does come. – AD 

See the resources sections connected to sessions 2 and 4 for links to some helpful forms. 

 For the question about a written retirement plan, we’ll defer to our friend, attorney Matt Meuli (see below). 

How does a living will differ from other wills?

Great question! A living will is concerned with your medical wishes, not your financial ones. It can also be referred to as an “advanced directive.” We call it a living will because it is in effect while you are just that—living! A living will might designate your chosen Medical Power of Attorney; it can also let your healthcare team know critical information such as whether you’d want to be resuscitated if your heart stopped, under what (if any) circumstances you’d want to be intubated or receive artificial nutrition, and who all in your family should be contacted in the case of emergency. – AD

This website links to Living Will Documents by State: Free Advance Directive Forms by State from AARP You can also ask your doctor’s office for their preferred form. 

I hear about different kinds of legal documents—power of attorney, durable power of attorney, medical power of attorney, living will, will, trust—is there a checklist or some kind of overview available, so that I can see if I have done what is good and necessary to prepare for the end of life and for making things simple and uncomplicated for my family after my death?

This is a fairly helpful overview of the various types of “advanced planning” and the corresponding documents: Getting Your Affairs in Order Checklist: Documents to Prepare for the Future | National Institute on Aging (nih.gov). 

Keep in mind that some documents and their requirements are state-specific. Also, we recommend that your “Medical Power of Attorney/Medical Agent” form be stored and shared digitally so that your named healthcare agent has it any time they might need it in an emergency. - AD

What if a loved one chooses to die at home and not under the care of a physician? Or if death is sudden and unexpected?

There are individuals who choose to die at home, not under the care of a physician.  When that is the case, it is important for their loves ones to know what steps to take following the death.  To learn more about what to do in such situations, we reached out to the Larimer County Coroner Stephen Hanks, who provided us with this response:

“When someone is not on hospice, but is cared for at home by family, the family should call 9-1-1 as soon as practicable. It is important they have any DNR paperwork ready to show first responders so CPR is not initiated. This is where it is nice to have some level of hospice care, so families do not have to call 9-1-1 and have fire, EMTs, and police respond to the home simply because you called 9-1-1. When 9-1-1 is called it may be beneficial to tell them this was an expected natural death and they have a DNR. I'm not sure if that would limit the number of first responders coming to the home, or if their protocols require the full response.

When we get the call from dispatch on these types of home deaths, usually the first responders have left the home but a police officer stays behind and waits for us. It is okay for families to call the funeral home if arrangements are made and have the funeral home en route. Our investigator will arrive at the home, talk with family, collect medications, and photograph the decedent and scene. If a funeral home is coming to the home we can let the police officer go and we will wait and assist the funeral home. We can also take the decedent back to our morgue if the family has not chosen a funeral home.” 

Is a person in hospice care automatically understood to be DNR?

Actually, no. “DNR” is an official doctor’s order, and you are allowed to be in the care of hospice without a DNR order in place. That said, being “full code” (that is, electing to have your heart restarted were it to stop) goes against the philosophy of hospice care which is to allow a natural death rather than seek potentially life-prolonging treatment. 

It’s possible that someone might wish to be “full code” even while on hospice in order to, say, try to make it to their granddaughter’s wedding in a month, and then elect to be “DNR” once again down the road. It’s important to know about the potential harm to the body (and even trauma to family or care team) that can occur when CPR is administered especially to those with chronic illness, and to educate yourself on the likelihood of surviving a CPR attempt. 

If someone is under the care of a hospice team, if the patient’s goal is to allow for natural death (and even if not!), it’s important to have a “POLST” or “MOST” form (specific form depends on your state) signed by a medical provider that specifies the type of treatment to be offered should, for instance, a team of paramedics be called to your home following a fall. This form is what allows the treatment selection (full treatment, selective treatment, or comfort-focused treatment) to be readily known to a response team. You can find that form here. A paramedic’s default response will be to administer CPR unless otherwise instructed by a doctor’s order (via something like the POLST form).

For more about the pros and cons of CPR and it’s effectiveness, we encourage you to check out this overview from the CPR Care Association or the book Hard Choices for Loving People by Hank Dunn. 

What does it cost to have a memorial service at St Paul’s? What’s the planning process for that? If we want to have our ashes interred here, how is that process done?

Currently the costs associated with a memorial service at St. Paul’s are:

  • Musician Costs: You may hire a musician of your choice. St. Paul’s organist, Monty Hogan’s fee for providing music at a funeral at St. Paul’s is currently (2023) $350.

  • Sound Tech: The fee to pay for a sound technician for the service is currently (2023) $75.

  • Reception: If there is a reception in the fellowship hall of St. Paul’s there is no fee for a St. Paul’s member and a $300 fee for non-member. All food is catered or provided by the family.

  • Minister: No cost to members of St. Paul’s. For non members the cost is $350. — FSG

What are the decisions to be made in planning a church funeral?

Start with this document.

The Liturgy for the Burial of the Dead can be found on page 491 of the Book of Common Prayer. Taking a look at this liturgy is a good way to understand the resurrection theology that grounds the service as well as understand some of the decisions involved in the planning of a church funeral at St. Paul’s. 

Some decisions to be made to begin include what scriptures, readings or music you might like. Do you desire communion to be a part of the service? Would you like friends and family to provide a eulogy or words of remembrance or prefer only a homily to be given by the minister? Would you like a reception and a time for loved ones to visit to take place at the church or off site at another location? All these decisions can be made in consultation with the minister to create a service you feel is honoring of you and your loved one’s wishes. —FSG

Death probably in Oregon. Can my cremains be put in St Paul’s common crypt?

St. Paul’s currently has a columbarium and common crypt on the grounds of Trinity Lutheran Memorial Garden located at 301 E. Stuart St. Fort Collins, CO. The first step to make arrangements for ashes to be interred in either a columbarium niche or in the common crypt of St. Paul’s is to contact the church office (office@stpauls-fc.org) and ask to speak to someone about initiating the process and signing a contract. Currently (2023) costs for a single niche is $1000. Each niche can hold two sets of ashes. To add an additional set of ashes in an urn to a pre-purchased niche costs $150. To have ashes interred in the common crypt is $150.—FSG

Being with the Dying

I would like to know more about accompanying people to their deaths who are dealing with dementia, Alzheimer’s, or stroke. What do they experience? What helps?

Beginning with asking what folks experience is a wonderful way to approach how we can accompany folks who are dealing with dementia, Alzheimer’s, or the after-effects of a stroke!

The most important guideline to use when accompanying such folks (or anyone, really) who are dying is to be as present as we can with them and their experience, to try to enter into their reality rather than attempt to force them into ours.  Some suggestions include:

  • Refrain from correcting them about “the truth”, e.g. When someone says, “My mother is coming soon” and you know that their mother is no longer living, you might reply with “Oh, that will be nice.  What do you enjoy about spending time with your mother?”

  • Reflect back to them what they are communicating with you rather than trying to guide them to have a different experience.  For example, if someone who has experienced a stroke seems frustrated with their inability to move or speak as they used to, we might acknowledge that frustration rather than trying to bright-side them with a comment such as, “It’s okay.  I’ll take care of it.” – AA

What does intubation feel like?  When could it be useful? 

Intubation can cause both discomfort and anxiety for patients, and this is sometimes challenging for their loved ones to witness.  When people are intubated, they are given various amounts of sedation medication; therefore, the physical sensations related to intubated vary amongst individuals.  It is common for intubated patients to also be given medication to help with anxiety that often arises.  Intubated patients sometimes behave with extreme agitation that requires them to be placed in slight restraints so that they do not pull out their breathing tubes.

Intubation is often used as a “bridge”, a way to help the patient become stronger as their providers work to bring them to a state of greater health.  When this is the case, patients are usually intubated for a few days.  There are circumstances when patients, having been intubated, are not expected to ever be able to breathe on their own (due to the advanced stage of their illness).  It is vital to talk with your/your loved one’s providers about when and why intubation is an option and to get clear answers to each of your questions about the expectation for intubation. –AA

What is the best way to give comfort to the dying?

There are likely as many answers to this question as there are individuals on the planet, because each of us is comforted in different ways.  Some people receive comfort in the form of gentle touch, others through music or conversation.  When we are accompanying someone we know well, it is wise to consider ways they have felt comforted throughout their lifetimes; and, when they are still able to answer us, we can always ask them what they would like (even after more complicated speech is not an option, we can ask “yes or no” questions about what they might like).  For nonresponsive people, we pay very close attention to body language and to changes in facial expressions to notice what is bringing a sense of calm and what is causing discomfort or disruption.  

Helping create an environment we know they might like is a significant gift we can give to the dying.  Play their favorite music, bring in objects that emit smells they like, surround them with people (if that is something comforting to them), or provide solitude (if they’ve preferred that).  

The single most important way we can give comfort to the dying is to be as present to them as possible, paying attention to their specific needs.  To do this requires that we are aware of any of our own thoughts, memories, emotions, and feelings that may be arising as we sit with them.  There is no need to rid ourselves of these, simply to be aware of them and not allow them to drive the way we interact with the person we are accompanying.  Our ability to be present also calls for our own self-care; taking time to do what nurtures us allows us to be a better source of comfort to the dying. – AA

When the person is not interacting do they hear what’s happening around them? Is is true they still hear what’s being said? When the breathing gets shallow are they trying to stay? Or is it a process for the body to shut down?

There is a great deal of evidence that indicates that those who are dying can still hear even once they seem to be nonresponsive.  It is thus wise for us to speak as if they are listening and to provide them with sounds (or silence) that we know might bring them comfort.

Often, breathing at the end of life becomes erratic.  We might have long pauses between breaths, rapid breathing, shallow breathing, a few deep breaths at a time – and any combination of these.  There are physiological reasons for this, related to the progression of disease we are experiencing.  There may be other reasons as well, such as “trying to stay”, although it is challenging to determine that for any individual by witnessing someone’s breathing from the outside.  Our capacity to control our bodies’ behaviors at the end of life is often limited, so we may move and breathe in ways those in a healthy body find surprising.  For helpful information about signs and symptoms at the end of life, see Barbara Karnes’ The Eleventh Hour:  A Caring Guide for the Minutes to Hours Before Death and Gone from My Sight:  The Dying Experience.  – AA

thinking through our own end of life

What book or books might you suggest we could read to prepare ourselves for our own death?

There are two sections in our Resources pages that contain many books that may be helpful as we prepare ourselves for our own death:  “Preparing for our Dying” and “Memoirs of Illness, Dying, Companioning, and Loss” come to mind.

What are ways to accept death and not be afraid? Hoping for a sense of not being fearful during the last part of my life.

Fear. Does that make me a bad Christian? We think it makes you an honest Christian! (And an honest human) Maybe think and talk about fear as an ally. — AA

processing a death by suicide

How to process a loved one’s suicide?

Here are links to some resources that might be helpful

https://www.pikespeaksuicideprevention.org/services/loss-grief-groups

https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/suicide/art-20044900

https://afsp.org/story/grieving-a-suicide-loss-eight-things-i-know-for-sure

https://www.apa.org/topics/suicide/coping-after

spiritual practices, ancient and modern

I’d like to learn more about the music that was played for people as they died in the pre-modern era.

Even though I have been studying these pre-modern practices for years,  I am still amazed and touched that people used to gather at the bedside and sing for a loved one at the end of life. It has been part of my academic work for the last seven years to look through medieval documents and recover this music. The results are being published by Oxford University Press. This is an academic book, and academic books are expensive… So if you do want to purchase a copy, please be sure to go to this link and use my author’s discount code: AAFLYG6. We will also have a copy in the 301 Faith Partners’ library. - ESH

Questions to Ponder

“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”  Rainer Maria Rilke

Questions about how to live and how to die (which, in many ways, may be seen as the same quandary) can often not be met with simple answers.  Instead, they invite us to contemplate throughout our lifetimes.  Our responses – and perhaps even the questions themselves – will change as we change. 

What do we tell our children that might not be part of the legal nor the very dying end? 

This question shows a lot of love to me. It seems like such a loving thing, to think of all of our beloved ones, and consider how distance and other circumstances might affect family interactions at the end of life. The circumstances in each family will dictate our responses, and these will change over time. - ESH

How much pre-prep should an individual undertake for “sharing” our death with others? Some prep might begin now, other prep might wait? Should another be contacted to serve as a “second” to fill in gaps as necessary?

This seems like a really important question, and one that we will each need to honor, ponder, and act upon individually. How much we share with others might depend on our specific circumstances (and these might shift at different points in our lives). In terms of preparation—what is necessary in advance–my own sense is that it is helpful for our loved ones if we can think through the major issues surrounding the end of our lives (medical, financial, legal, disposition of remains) and make our preferences known (and easily accessible), if we have them. I also think that having a “second”--a person who can speak on our behalf when we are unable to–is a great idea. The forms naming a medical power of attorney and financial power of attorney can help formalize that role and allow our “second” to effectively advocate for us.--ESH

How to best have a discussion with my spouse about preparing for our own deaths.

The conversation guides and 5 wishes are wonderful tools for starting a meaningful conversation. I would also like to recognize the courage that it takes to bring up an uncomfortable, unusual, and important topic like preparing for death. Even if starting the conversation feels awkward (it always has for me!), please know that you are doing good work. —ESH

How do we determine what is best to do (not to do) for our dying?

Honoring and pondering this question is important. Many of us will be called on to make big decisions for our loved ones in cases of severe illness or injury, and at the ends of their lives. I hope to be able to make decisions that are wise and loving, and I know that this might not be easy. Sometimes time is tight–the decisions will have to be made quickly–and they will probably involve situations that I will be unfamiliar with. I might have to try to learn and understand about medical situations and medical procedures and bureaucratic processes that I have not encountered before.—ESH

How best to prepare friends and family for my impending death. What do I need to say to them?

I feel like this is such an important question, and the answer is probably different for each of us, and different in certain moments–depending on our particular circumstances and relationships.  A friend of mine who worked in hospice care once shared these thoughts with me–that saying good-bye might contain the elements of:

  • I forgive you.

  • Please forgive me.

  • Thank you.

  • I love you.

May God bless our moments with our loved ones. May we find words of love, healing, reconciliation, and encouragement. May we find words that point to what cannot be expressed in words.  — ESH


Questions We Have Received but Not Yet Processed

Why are nutrition and hydration different decisions?  I remember my mother's grateful, albeit silent reaction to receiving a gentle dropper of water with no danger of choking.  I will never check the no hydration box.

Coping with hard debilitating illnesses and death

How to reach out to friends and family? When should we call others in? (And how?)

Being someone who has never attended a death or a funeral, are there any common yet unexpected reactions to be anticipated?

What is your experience of persons having premonitions or dreams about impending death?

How can I learn to let go?

More information about natural funerals.

More information about body and organ donation in Colorado.

How long can you keep a deceased loved one at home for family to say goodbye?

Can we legally dig a hole in our yard, put the deceased in a sheet, and bury it?

leaving a legacy

How to talk with my children / grandchildren about my death (assuming I have time)? Showing / living with gratitude?

Hearing other people’s thoughts on “legacy.” What does that mean to people in our current culture?

How do we reduce stuff important to us, but not to our kids? We have lots of “stuff” important to our parents, but of little meaning to us. How do we prevent our kids from having this same burden?

Sharing with family [the] journals that let them know who their mother is.

Medical Aid in Dying

For people with a terminal health condition, why doesn’t the church support some assisted death option?

The costs of long-term care

Paying for nursing homes, assisted care, etc. on a limited income.

Grief—ours and others’ 

Ways to prepare the bereaved, specifically adult children

Questions Pertaining to Financial and Estate Planning

These questions are outside our area of expertise. The attorney who graciously donated his time to speak with us during this series, Matthew Meuli, Attorney/Counselor of Meuli Law Office, PC - Estate & Business Planning Counsel, has been kind enough to give us his caring responses to these questions, and we have added them HERE. Our deepest thanks go to him and his team for their time.

Please refer to the Colorado Bar Association’s Estate Planning Flyer and Probate in Colorado Flyer for more information on how to proceed.