End-of-life planning can feel uncomfortable because it requires families to talk openly about death, serious illness, quality of life, and the care a loved one would want during their final months, weeks, days, and hours.
But avoiding the conversation does not prevent death — it often leaves families making difficult decisions without knowing what their loved one would have wanted.
In a recent episode of Thriving to the Finish Line, Shannon Miller, founder of The Miller Elder Law Firm, sat down with Laura Monday, Elder Care Coordinator, for an honest conversation about end-of-life planning, hospice, dementia, caregiving, quality of life, and what families can expect as the body begins the natural dying process.
Both Shannon and Laura have helped families navigate the end of life professionally, and both have also experienced these conversations personally. Their message throughout the episode was simple: the more we talk about death before a crisis, the better prepared we are to honor the person who is dying.
Why End-of-Life Planning Matters
Throughout most of our lives, caregiving means helping someone get better.
We encourage children to grow. We encourage parents to recover. We remind loved ones to take their medication, eat their meals, attend therapy, and keep fighting.
That instinct can become incredibly difficult to turn off when someone is approaching the end of life.
Laura described working with a family member who felt guilty if he visited his mother without encouraging her to eat. The instinct came from love — he had spent his life believing that helping meant keeping her nourished and strong.
But near the end of life, the goal of care may begin to change.
Instead of asking only, “How do we keep this person alive?”, families may need to start asking:
- Is this intervention making them more comfortable?
- Is it supporting something they still enjoy?
- Are we helping them, or are we prolonging discomfort?
- What matters most to this person now?
- What did they tell us they wanted before they could no longer speak for themselves?
Those are difficult questions. They are also some of the most important questions a family can ask.
Food, Hydration, and the Natural Dying Process
One of the most emotionally difficult changes families may notice near the end of life is a decline in appetite.
Our instinct is often to encourage food: Just take another bite. Drink a little more. You need your strength.
But Shannon and Laura discussed how the body’s needs can change as death approaches. Swallowing can become difficult. Digestion may slow. A person may sleep more and simply no longer express much interest in eating.
In those moments, connection may matter more than calories.
Rather than turning every visit into a conversation about food, families may be able to focus on:
- sitting together
- playing favorite music
- holding a hand
- telling stories
- allowing the person to sleep
- offering food when it is wanted rather than forcing it
Laura summarized the issue through the lens of quality of life. If someone is still getting meaningful enjoyment from life, eating and other interventions may support that. But when meaningful moments have become very limited, families may need to reconsider what they are trying to accomplish through continued intervention.
Voluntarily Stopping Eating and Drinking
Shannon also discussed voluntarily stopping eating and drinking, commonly known as VSED, as an end-of-life option that some individuals may consider.
The larger point for families is that decisions about food and hydration at the end of life deserve careful, individualized conversations with the person’s medical team, hospice providers, and legal decision-makers.
For people with dementia in particular, advance planning can become especially important because the person may eventually lose the ability to clearly communicate preferences about feeding, hospitalization, antibiotics, or other interventions.
That is one reason advance directives should do more than simply name a decision-maker. They should help that person understand what quality of life means to you.
Dementia Can Make End-of-Life Decisions More Complicated
Dementia does not follow one predictable path.
Laura and Shannon discussed how different forms of dementia may progress differently. Vascular dementia, for example, may involve more sudden declines, while Alzheimer’s disease may unfold over many years.
Eventually, however, families may confront questions such as:
- Should we continue hospitalizing for infections?
- Should aspiration pneumonia be treated aggressively?
- Should food be pureed and offered when a person can no longer request it?
- What if the person no longer recognizes family?
- What if they can no longer move independently?
- What would they have wanted if they could still tell us?
These questions are much easier to answer when families have talked about them before cognitive decline removes the opportunity.
A useful advance-care conversation might include statements such as:
“If I can no longer recognize the people I love, communicate what I need, or experience the things that give my life meaning, I do not want aggressive interventions simply to extend my life.”
The exact language will be different for every person. What matters is having the conversation.
What Does Quality of Life Mean to You?
One of the most powerful themes of the episode was the idea that quality of life is personal.
For one person, quality of life may mean:
- walking the dog
- attending church
- recognizing family
- listening to music
- going to the theater
- eating favorite foods
- gardening
- spending time with grandchildren
- painting
- living at home
Laura shared that music remains one of the things that gives her father, who lives with Parkinson’s disease, real joy. She took him to see Million Dollar Quartet at the Hippodrome, and he enjoyed it so much that when she asked whether he wanted to see another play, he said he wanted to see that one again.
So he did.
That story captures something important about end-of-life planning: the moments may become smaller, but they can still matter enormously.
Planning is not only about deciding when to stop treatment. It is also about identifying what still makes life worth living and helping someone experience as much of that as possible.
Hospice, Palliative Care, and Hospice Houses: What Is the Difference?
The terms surrounding end-of-life care can be confusing, and fear of the word “hospice” sometimes prevents families from seeking support sooner.
Palliative Care
Palliative care focuses on comfort, symptom management, and quality of life for people living with serious illness.
A palliative care team may help coordinate complex care involving multiple providers, medications, therapists, and specialists. Palliative care does not necessarily mean someone is actively dying.
Hospice Care
Hospice generally focuses on people who are approaching the end of life and have shifted away from curative treatment for the condition that qualifies them for hospice.
Hospice services may be provided:
- at home
- in assisted living
- in a nursing facility
- in a hospital
- in a dedicated hospice facility
Hospice can provide medications, medical equipment, supplies, nursing support, social work, spiritual care, and education for family caregivers.
Inpatient Hospice or a Hospice House
For some families, a dedicated hospice facility may provide additional comfort and reassurance.
Laura and Shannon discussed how an inpatient hospice setting can be especially helpful for families who do not feel comfortable determining when medications should be given at home. Staff members who understand the dying process are available to monitor symptoms and provide support.
The right setting depends on the individual and the family.
What Is a Death Vigil Plan?
Shannon introduced the concept of a death vigil plan — essentially a plan for the environment and people surrounding someone during the final stage of life.
A death vigil plan might address:
- Who do you want in the room?
- Who should be part of the wider circle but not constantly present?
- What music would you like?
- Would you prefer quiet?
- Would you like the lights dimmed?
- Would you want to remain at home?
- Would you prefer more medication for comfort, even if it makes you sleepy?
- Are there religious or spiritual traditions you want honored?
- Are there people you specifically do or do not want present?
These may sound like small details, but they can completely change the experience of dying for both the individual and the family.
Understanding the Signs That Death May Be Approaching
Families are often frightened by changes that are actually part of the natural dying process.
Shannon and Laura discussed how people may:
- sleep much more
- become increasingly difficult to wake
- eat and drink less
- withdraw from conversation
- become less physically active
- experience changes in breathing
- have periods of unconsciousness
- become increasingly weak
Some people also experience what hospice professionals sometimes call a rally — a brief period of increased alertness or energy shortly before death.
Families may interpret this as recovery. The person may suddenly talk more, eat, recognize loved ones, or seem significantly stronger.
A rally can be a meaningful opportunity for connection, but it does not necessarily mean that the underlying condition has improved.
Want a Guide You Can Keep With You?
Our free Understanding the Dying Process guide walks through what families may notice in the final months, weeks, days, and hours — plus practical ways to support comfort and connection. Submit the form below to download your guide today.
End-of-Life Dreams and Visions Can Be Comforting
One of the more fascinating parts of the episode involved experiences sometimes reported by people approaching death.
Families and hospice professionals may hear someone speak about seeing or communicating with people who have already died.
Laura described it as something that could be interpreted in different ways — spiritual, psychological, or perhaps similar to an awake dream.
Whatever the explanation, these experiences can feel completely real to the person having them and can sometimes provide tremendous comfort.
Rather than correcting someone or insisting that the experience is not real, families may simply listen.
What Is an End-of-Life Doula?
Most people are familiar with birth doulas. End-of-life doulas provide a similar kind of nonmedical support at the opposite end of life.
An end-of-life doula may help individuals and families:
- talk about dying
- develop a vigil plan
- understand what to expect physically
- create a calmer environment
- identify meaningful rituals
- support family members emotionally
- prepare for the hours immediately before and after death
Shannon shared that she completed end-of-life doula training and now incorporates much of that education into conversations within the firm’s Life Care Planning work, although the firm does not serve as an end-of-life doula service.
For families who want that additional support, an experienced local end-of-life doula can be a valuable addition to hospice and medical care.
What Happens Immediately After Death?
Another reason education matters is that the hours after death can contain surprises families are not prepared for.
The body changes quickly after death. There may be physical releases or changes that are completely normal but can feel alarming if no one has explained them in advance.
Families also may want time to:
- sit with their loved one
- pray
- play music
- gather family
- wash or dress the body
- participate in cultural or religious rituals
- say goodbye privately
That is why talking about these preferences beforehand can make a significant difference.
Funeral, Burial, Cremation, and Green Burial Choices
End-of-life planning should also include what happens to the body after death.
Shannon and Laura discussed how uncertainty about burial or cremation can create unnecessary family conflict. One relative may remember hearing that the person wanted burial, while another may be certain they wanted cremation.
Simply talking about it ahead of time can prevent that.
Options may include:
- traditional burial
- cremation
- conservation or green burial
- religious burial practices
- other personal arrangements
Shannon discussed her experience helping dig a grave at Prairie Creek Conservation Cemetery, which offers a natural burial alternative in North Central Florida.
The key is not choosing one option over another.
The key is choosing — and telling your people what you chose.
Advance Directives and End-of-Life Planning
Traditional advance directives often focus on questions such as ventilators, feeding tubes, resuscitation, and artificial nutrition.
Those decisions matter.
But Laura and Shannon’s conversation suggests another question families should consider:
What makes your life worth living?
Instead of discussing only particular treatments, talk about the experiences that define quality of life for you.
You might say:
- “If I can still recognize my family, I want treatment.”
- “If I can still listen to music and enjoy it, that matters to me.”
- “If I can no longer communicate with anyone I love, I would not want aggressive intervention.”
- “If I cannot leave a bed or chair and experience meaningful connection, I want comfort to become the priority.”
Those conversations give a health care surrogate far more guidance than a checkbox ever could.
Why Families Should Talk About Death Before a Crisis
Laura shared that one of the things that helped her when her mother was dying was that they had already talked about what her mother wanted.
Her mother had watched her own mother stop eating near the end of life and had honored that choice. Later, Laura understood that her mother wanted the same kind of autonomy.
That knowledge did not make losing her mother easy.
But it helped Laura know she was honoring her.
That is the gift these conversations can provide.
Without them, family members may be left asking:
- Would Mom want another hospitalization?
- Would Dad want CPR?
- Did she want cremation?
- Would he want to remain at home?
- Should we keep pushing food?
- Would she want us to continue treatment?
With advance conversations, those questions become less about guessing and more about honoring.
The Bottom Line
End-of-life planning is not about giving up.
It is about deciding what matters when medicine can no longer restore the life someone wants to live.
It is about comfort instead of fear.
Connection instead of obligation.
Autonomy instead of assumptions.
And preparation instead of crisis.
Perhaps the most meaningful question families can ask one another is not simply:
“What treatments do you want?”
It is:
“What makes life meaningful to you — and what would you want us to do if those things were no longer possible?”
Having that conversation now may be one of the greatest gifts you can give the people who will someday have to speak for you.
Planning for the End of Life Should Start Before a Crisis
At The Miller Elder Law Firm, our Life Care Planning team helps families prepare for the legal, care, and practical realities of aging — including advance directives, health care decision-making, caregiver support, long-term care planning, and conversations about quality of life.
Our Elder Care Coordinators also help families understand changing care needs and connect with hospice, palliative care, and other community resources when appropriate.
📞 Call The Miller Elder Law Firm at (352) 379-1900 or fill out the form below to schedule a consultation.
CONTACT THE MILLER ELDER LAW FIRM TODAY.