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Fears and Stresses: End of Life & Memorial Planning

By John M. Stuart, MSW

 Image by Hartwig HKD

Image: by Hartwig HKD *

End of life planning is, without a doubt, uncomfortable. The upside is that it can ease uncertainty, fear and physical discomfort associated with death.

5 Reasons we fear end of life

In one of his blogs, funeral director Caleb Wilde identifies five key reasons that we fear death:

  1. We’re unfamiliar with dying.
  2. We fear dying in an unfamiliar place.
  3. We fear dying alone.
  4. We don’t know our caregivers during end of life care.
  5. We fear being a burden to our families.

Additionally, I would add to Caleb’s list that we fear missing our families, our children, and our grandchildren.

End of life directives

As a legally competent adult, we have the right to decide where we die. We can also make decisions when curative medical treatments no longer provide a desired quality of life. Considering hospice at that time eases fears around where we’ll be and who will be with us during our final moments. Hospice intervention also provides family and caregivers with needed support.

But what happens if we become legally incompetent and essential decisions need to be made?

There is a high importance on executing advanced directives while we are legally competent. Having these in place gives greater certainty that our end of life wishes will be carried out by those we trust. These important directives are legally binding documents.

Types of Advanced Directives

Our medical providers should have a copy of all medical directives.

  • Living Will: A written statement that outlines your wishes at the end of life should you no longer be in a state of clarity. It provides the caregiver and doctor with treatments you do not want to receive, as well as details on what you do want.
  • Durable Power of Attorney for Health Care: Gives a designated person authority to facilitate specific actions on your behalf if you become incapacitated and unable to make decisions. It is important to note that a typical Power of Attorney document terminates when the principal (in this case the dying person) becomes incapacitated. Specialized wording in a Durable Power of Attorney states that the power survives the principal’s incapacity.
  • Do-Not-Resuscitate (DNR): A separate medical directive usually executed at the end-stage of a terminal illness. A DNR specifies that "no resuscitation" efforts, including CPR, be used in the event of cardiac arrest.
  • Financial Power of Attorney: Allows a designated person to make specified financial decisions and business transactions on our behalf. An appointed executor of our Will and estate can manage and disburse assets after our death, as we desire.

Avoiding family stress

What happens when end of life involves critical decisions regarding an estate and benefactors of the ill or elderly? Families can become embroiled in conflict, thereby making decisions more difficult than need be. And the situation creates additional stress for the dying person. Mediation services are available. Information can by found by searching for elder and family mediation services.

Areas of decision and possible conflict include:

  • end of life residency
  • caregiving responsibilities
  • care and distribution of lifelong possessions
  • sale of home
  • safety and health concerns
  • wills and estates
  • directives
  • end of life goals
  • memorial services and final resting place

When involved in sorting through the above, three main sources of conflict include:

  1. interference from family members (spouses and/or children) who are not immediate heirs
  2. early removal of items from home before consent from all heirs
  3. personality differences among heirs

Working through these challenges with a neutral party can save the family’s integrity and alleviate stress for the dying person. It is an opportunity for all involved to have tough but important conversations and preserve the well being of everyone involved.

Preplanning a memorial

Expressly stating final wishes relieves the bereaved of having to make difficult decisions. The following are important considerations when preplanning.

Selecting a memorial cremation urn

If cremation is preferable, selecting a memorial urn for ashes is an important decision. Choices about what type of urn depend on where it will be displayed, or if it will be interred in a family plot or urn vault.

Clarifying in advance who we want to receive our cremains helps avoid conflict between family members, especially if there is no surviving spouse or next-of-kin to make this decision. An appointed executor of our Will can also determine who receives cremains. Keepsakes and urn jewelry create options to share cremains with family members and/or friends as treasured tokens of remembrance.

Alternatively, selecting a scattering urn goes along with a decision for scattering ashes over a beautiful landscape or in water.

Planning the memorial service  

Advance planning with loved ones allows an opportunity to express how we want to be remembered. We can specify that in lieu of flowers, a donation to our favorite charity is preferable. Family members can be collectively involved in the selection of special songs and the recalling of cherished memories to eulogize a life to be remembered.

Purchasing pre-need services provides an opportunity to secure fixed funeral costs while price shopping for comparable products and services.

There is a thought-provoking story about a young girl recently reported in CNN Special Report. "Heaven Over Hospital: Parents honor dying child’s request,” tells the story of four-year-old Juliana Snow. In conversation with her parents, she expressed that she no longer wanted life sustaining treatments for an incurable neurodegenerative disorder. While not going to the hospital would mean certain death if she were to get an infection, Juliana chose to remain comfortably at home with her family. She expressed her personal wish to go to heaven instead of the hospital.

Though there are legal questions surrounding a child's right to decide her end of life care, Juliana's circumstance challenges us to step beyond the fear of death to talk about its eventuality as a fact of life.    

Engaging in end of life conversations prepares loved ones for our earthly departure when the time arrives. Thinking about death brings fear and uncertainty. Planning for it can bring peace-of-mind and a sense of certainty.


John Michael Stuart, MSW has been a social worker since 1997. He has worked in nursing home, hospice and home health settings, including one of the nation's largest Social HMO demonstration projects where he coordinated care between physicians, patients and their families. John has had cerebral palsy since birth and has authored Perfect Circles, Redefining  Perfection. He is also a public speaker and currently works as a home health social worker in Las Vegas.