The Beginning Steps of End Of Life Planning: What to Expect, Where to Start and Who to Talk to

Mature couple at a man's desk in an office, he is speaking to them

End of life discussions are important to ensure that one’s personal wishes and preferences are known, making sure that their loves ones know what they want in their final days as well as after their death. These discussions are difficult but crucial, while some come to terms quickly with death others have a harder time dealing with it and during times of emotional crisis making critical decisions in the moment can add more stress and emotional turmoil for everyone.

Initiating end of life planning can be upsetting for some to the point where they end up completely avoiding it but there are a few ways to help ease into the beginning arrangements. The first way is gathering the important documents needed, figuring out where money or assets will go, and who is involved. This step includes preparation such as gathering end of life planning documents, making a list of all important assets (including what will happen to these assets), deciding on end of life housing plans, and settling on final wishes for funeral and burial arrangements.

One of the most natural catalysts for this discussion is admission to hospitals or hospice care which lead to open discussions between patients, family members and healthcare professionals about what the next steps are. While this might not be how everyone begins their end of life discussions, it is one of the most common. Doctors also can offer thorough insight to a patient’s condition, short or long term treatment, and end of life options per patient request. When a doctor (or patient) opens discussion for end of life options there are some key questions a patient should discuss with their doctor including:

  • How much do you personally want to know about your condition? Would you rather know the basics, or would you like to know in more in depth detail? If you have a terminal illness, would you like to know how quickly it is progressing?
  • How much information about your condition can the doctor share with their family?
  • Which family members can know more important information? Who is the primary decision maker?
  • Do you want to spend your last days in the hospital, nursing facility or at home? Do you have a preference or are you okay with any option?
  • Is quality or quantity of life more important to you? Would you like to receive treatment indifferently?
  • What is palliative care and is it right for me?
  • Would you like a DNR (do not resuscitate) order?
Doctor speaking to a mature woman in her office they both have masks on

Another way that end of life discussion can happen is an open, honest conversation with family. End of life planning can happen at home at any time and realistically any age. While it is not easy to discuss death and planning for after death, it makes it easier on families during the grieving process. When planning at home there are several questions one should ask themselves such as:

  • Do I need a will?
  • If I already have a will, does it need to be updated?
  • Who will make decisions for me if I cannot make them myself?
  • Do I have life insurance?
  • What type of healthcare arrangements if I end up going to the hospital or hospice care?
  • Do I have money set aside for funeral arrangements?
  • What are my preferences for my body after death? (Burial, cremation, whole body donation, etc.)
  • Do my family members know where my important documents are?
  • Which family members do I share my end of life plan with? Who will honor my preferences?
  • What type of memorial do I want? (traditional funeral or something more modern)

Talking to family about death can be more difficult without a healthcare provider as support in answering questions and receiving information. There are a few tips and tricks thought to keep the conversation on the right track, open and honest.

Be Engaged with them and make direct eye contact and answer any questions they have. Be firm in decisions, tell family members important information they should know but remain compassionate.

Give Them Time dealing with the death of a loved one, even just in discussion and pre-planning phases is not a happy topic. Just as the individual who initiates the planning, family members must come to terms with the future. If they need time to process or are not ready to continue the conversation, give them time and come back to it.

Encourage Respect and Ensure Understanding even if this means not involving family members who might not respect certain wishes or preferences, let the family members who will know what is expected. Be thorough about planning and expectations so everyone fully understands what is being asked. If they need reassurance that all decisions are made in sound mind, give them that. Keep the conversation at a high level and fact-based to help with peace of mind.

Remember, change is okay, having the initial conversation is hard enough, so if changes come up to any planning, family members could become worried. Just remember that change is natural and if preferences about burial arrangements, healthcare options, or even how assets will get split up that it is okay to change them and discuss them with family. Any family member who is decided to be involved with end of life planning should be kept up to date with them.

Keep Them Involved by not only letting them know of any change in preferences but also taking them to doctors’ appointments or any end of life planning appointments, if necessary. Let them ask the professionals questions to help them feel at ease and get a better understanding of what is going on.

Put It In Writing while this might seem obvious it can be often overlooked but patients should have an advance directive which falls into three categories: a living will, a power of attorney or a healthcare proxy. This written statement of a person’s wishes regarding medical treatment and end of life plans helps ensure those wishes are carried out especially if the person is unable to communicate them.

With keeping these tips in mind, the conversation about end of life can be easier. While it is always going to be difficult to initiate and family members might struggle to accept these decisions or the future, beginning the conversation and being prepared can only help ease the transition. While it might seem easier to put it off until the time comes, early planning helps ensure that an individual’s preferences and wishes are honored regardless of the future outcomes.

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Research For Life - Understanding Whole Body Donor Consent

Hello, my name is Garland Shreves, CEO of Research For Life. I want to take a moment to discuss some very basic information with you regarding consent forms, in general, that you may encounter when considering to donate to a whole body donor organization.

First and foremost, you need to understand and read the consent form, also known as the authorization form or document of gift, so you know what you are consenting to.  Ask questions of the organization if you don’t understand something. 

 All states require, under the Uniform Anatomical Gift Act, that consent be granted by an authorized agent of the donor or self-authorization before death.

Each state defines who in the consenting class has the most authority to direct donation. Such as the medical power of attorney, spouse, children, grandchildren, siblings, etc. and differs slightly in each state. 

Consent may be given by means of a verbal recorded consent or by a written document of gift.

Research For Life uses a written consent form which can be found on our website.

Understand that the donor or authorizing agent is giving the body to an organization. Once given it belongs to the organization to use in accordance with the consent form.

In other words, the donor organization is free to use the donor provided it does so within the terms

of the consent, it may not use the donor in a manner not consented too.  

The consent may state how the body may be used.  Educational and/or research purposes or some other purpose may be stated or in the discretion of the donor organization.

Research For Life provides cadavers and/or anatomical specimens for education and research purposes and does not do ballistic testing.

The consent may state that the body will be used in whole or in parts. It may also state that the anatomical parts may be used domestically and or internationally.

And most consents will cover some basic things like consent to test the donor for diseases and order medical records to help best determine the medical suitability for the donation.

The consent may also touch on issues like for profit or nonprofit status and if the donor or anatomical specimens will be used by one or more or both types of entities.  Remember that regardless of an organizations tax status they all charge fees to end users who order anatomical specimens and offer those specimens to both for profit and nonprofit entities.

From the very start of the donation process costs to the donor organization begin. 24-hour answering service, transport team to respond 24/7, qualified trained staff paid a livable wage with benefits and retirement, electric, gas, phone, insurances, building payments, maintenance, medical director, and regulatory requirements, and cremation fees. And these are just some of the expenses that an organization may have to cover.

Another item you may see on most authorization forms is a release of liability, a hold harmless agreement, excluding misconduct of course.  

Research For Life states clearly it will not and donor or agent agrees that Research For Life will not be held responsible for acts of third parties in connection with the donation.

Another item that reduces a donor organizations liability is the Anatomical Gift Act prohibits criminal, civil or administrative actions provided there is no intentional misconduct on the part of the donor organization. In other words, if the donor organization acted in good faith it is immune and provided some protection from lawsuits.

Another important part on a consent form is the person signing the authorization attests (affirms) that they have the authority to direct the donation. The donor organization accepts the authorizing agent’s authority in good faith barring any information known to it at the time of donation that would contradict the authority of the person authorizing donation.    

Remember, should you decide to register, tell your family and friends about your decision.

Also, the donation authorization form is not valid until notarized or signed by two witnesses; one witness must be non-family or disinterested party. 

Consent forms contain other important information that you need to read and understand.

All documents of gift or authorizations can be cancelled prior to death.

I want to thank you for taking the time to watch this video and I hope it helped provide you with some basic information regarding whole body donation consent forms.  Thank you.