Death – Decisions

Decisions

It is understood that family units are all different and may be made up of biological or chosen family, spouses or partners, relatives or close friends. We will use the term “family” for those closest to you. These differences may dictate what, exactly, you need to do to from a practical standpoint to prepare for your death, but regardless, the first step should be honest family discussion. We’ll call it “The Talk.”

The Talk

It doesn’t have to be a formal meeting. If you and your family are open to the discussion of death “The Talk” can be in increments and flow from normal conversations. When discussing the death of an acquaintance it is a natural time to say, “When I die, I prefer . .” Since such discussions may not include everyone who needs to hear, having your wishes in writing, leaves no doubt or confusion. So, what do you need to talk about and how will you document it?

Living Will

Legal agreements can be our guides. Let’s start with those things usually addressed in a Living Will. If you are diagnosed as terminal and are no longer able to make your own decisions, because you are permanently unconscious or otherwise unable to express your wishes:

1. Do you want treatment withdrawn except for pain control?
2. Does that include withdrawal of food, water?
3. What about a DNR (do not resuscitate) order?
4. Do you wish to participate in anatomical donation?

Decisions for #1-#3 can be very difficult for a family member. You may have no doubt that these life prolonging actions are inappropriate or undesirable for you, but to your loved one it is not that clear. To them it may feel as they are hastening your death, while you are more likely to feel that such measures would prolong suffering. If this has been discussed and documented ahead of time, there is less anxiety when the decisions must be put into practice. Physicians, emergency personnel and hospitals must provide every means available to save a life if they have not been given the legal right to withhold those interventions. Resuscitation (CPR) will be initiated, regardless of the patient’s prognosis, unless there is an order in place for DNR.

Number four (#4) involves whether you would like to donate organs for transplantation or all of your body to science. If donating the entire body is your desire, besides documenting, it is best to make logistical arrangements in advance. Most such donations are made through a university or medical school.

Organ donation decisions are often made long before formal end of life planning. In most states one can designate the wish to be an organ donor while obtaining or renewing a driver’s license. Organ donation more specifically is addressed in the Living Will. If you have explicit wishes, maybe you are willing to donate corneas, but not hands for example, this needs to be legally documented. On this subject people often think first of heart or kidney, organs which dramatically save lives. In fact, donations may be made of tissues such as skin which is used as dressings for severely burned patients or bone for spinal surgery. There may be personal or practical reasons for specifying exactly which organs/tissues you are willing to donate and these can be itemized in your Living Will.

Consider Donation of Organs or Tissue

Transplantation is a subject that I feel strongly about, having worked in that field for many years. I find it unfortunate that after over sixty years of successful transplantation, only 52% in the US choose to donate. If you have not already made your decision, please give some consideration to it now. There is no lack of information available to answer any questions you may have. I recommend calling your local/state donor affiliate or researching Online.

The United Network of Organ Sharing (UNOS) is the national organization which governs transplant facilities and Organ Procurement Organizations (OPO) in the United States. Their website probably contains more information than you would ever need: https://www.unos.org

Cornea transplantation differs in some ways from other donation and a good site for more information is https://www.donatelife.net/types-of-donation/cornea-donation/

Bone marrow and stem cell transplantation is still in the experimental phase for cadaveric donation, but is showing promise. If you are interested you may find information at the National Marrow Donor Program: https://bethematch.org

Your Surrogate

A Living Will allows one to record legally, exactly what one wants and does not want. Or, with this document you can authorize a HEALTH CARE SURROGATE, sometime referred to as a proxy or Medical Power of Attorney (POA), to make these determinations for you at the time of need.

Choosing a Health Care Surrogate is a very critical decision. First, of course, is that it be a person you trust. Your designated surrogate should be geographically close if at all possible and should know your wishes before accepting this responsibility. A few of the subjects included in a legal Surrogate Designation are:

1. Access to your medical record
2. Right to choose your health care providers and long term facilities
3. Withdrawal of life-prolonging treatment

This legal document names your surrogate and an alternate surrogate in the event the first person designated is unable or unwilling to serve at the time she/he is needed.

Update and Storage of Documents

Sometimes we change our minds about the directions we’ve given and the Living Will and/or Surrogate Designation may require legal revision. These documents need to be reviewed on a regular basis. If our wishes remain the same, it is probably advisable to initial and date each page to show that they remain current. Having your Living Will on file at your hospital can make it difficult to keep current. I would trust a photocopy carried by my surrogate (and in my car’s glove box) more than the hospital’s computer system. It goes without saying that original documents need to be stored in a locked fireproof box and that your surrogate and/or POA has access.

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“It seems to me most strange that men should fear; Seeing that death, a necessary end,  Will come when it will come”  Shakespeare in Julius Caesar

Death – Intro II

Introduction II

As we move forward discussing the topic of death and end of life decisions, in particular, I refer you back to this blog’s first page, HOME. At the bottom is a disclaimer and it is important that you review it at now, particularly this:

“The content of this blog is not intended as advice . . . . Information contained herein is not presented as medical, legal or clinical recommendation . . . .”

And, I would add:

1. It is extremely advisable to seek legal counsel from an attorney for estate/end of life planning.
2. Forms are available Online for your review (or printing), but I caution you to use either the US Government (https://www.usa.gov/federal-agencies/a) or (https://www.irs.gov/forms-pubs), your State Government (state laws differ) or the American Bar Association (http://www.americanbar.org/groups/real_  property_trust_estate/resources/estate_planning/living_wills_health_care_proxiesadvance_health_care_directives.html) Websites. Using these sites one can avoid ads and scams.

The kind of end of life decisions we will focus on are sometimes included during estate planning which deals with financial issues. Money management is not part of our discussion.

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Future Posts

In the next few posts we will discuss the following topics, some more in depth than others:

• Power of Attorney (POA)
• Living Wills
• Health Care Surrogate/Proxy
• Organ Donation
• DNR (do not resuscitate) orders

Other topics in the future will include: Funerals, Obituaries, Grief and Suicide.

In the last post I asked you to say the words: “When I die” and to acknowledge we are born terminal. Some of you responded with your thoughts and experiences and I appreciate your honesty and willingness to share. It is not surprising there are those who are not ready to talk about such personal feelings. Discussing death is difficult in varying degrees based upon our past experiences and other factors, e.g., religion, age, health status. It was reassuring some of you have already taken formal steps to inform others of your wishes at the time of your death.

Reader Feedback

Marybeth, while sharing that her parents were very organized in having preparations in place for death, also stated, “Perhaps it is the way a person dies (long illness, accident, suicide, etc. ) that shakes our world more than the actual act of death itself? ” This is a valid observation, because while losing a person one loves will always be painful, there are many variables which affect how we react and how we grieve.

Rita discussed the awe of her own conception which is the beginning of the brief interlude we have on this planet. We often hear “cradle to grave,” which sums it up.

Finally, Lula shared the preparation she has made for her own death having had that responsibility for deceased loved ones. Such experiences in dealing with the estates and last wishes of others certainly point out the value of thinking ahead and making the decisions we are about to discuss.

Thank you to each of you who shared.

With the next post we will begin discussing the person (proxy) who makes medical decisions for you when you are unable to express your wishes. That person may be designated in a Medical POA, a Living Will and/or Designation of Health Care Surrogate.

“Life cannot exist without death; neither can death exist with life.” Osho Rajnish

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Past Problems with the COMMENT Section

Some have expressed frustration with trying to comment on posts. I understand and I admit it isn’t easy to figure out and I’ve made some changes AND mistakes along the way. To comment on any post click the little bubble below and right on this page. If yours is the first comment that little black bubble will have a + sign on it. If others have already commented there will be a number in the bubble. Either way, all you have to do is click the bubble and a space will be provided on which to write.

Here is a screen shot from my phone that shows the illusive “bubble.”

Thanks again!

Death – Intro

Introduction

How many times have you heard someone say, “If something happens to me?” Have you said this? Often, perhaps? I know this may not be what you want to hear, but I must tell you, it is not “if,” but “when.” And, it is not “something,” but it is “death.” Practice with me, say, “When I die.” Did you say it aloud? How did it make you feel? My purpose in this exercise is not to make you uncomfortable, but to help you acknowledge you will die. Of course, you know it intellectually, we all do, but we live and speak as though it is not certain. I am not referring to religious beliefs about the hereafter, but about the here and now. Once we accept the fact we are all born terminal, it is easier to make certain practical decisions. It is more likely we will have important family discussions.

In future posts I plan to examine this subject in more depth. The goal is that, as a result, you will take positive steps to help yourself and your family face this most difficult day that will come to each of us. I also hope you will trust me that this topic can be brought into the light in a way that alleviates some of the dread often associated with the word “death”.

We will examine some of the decisions that need to be made through legal documents and family discussion. We will look at funeral planning and resources available. We will definitely discuss ways to comfort those who grieve, e.g., what to say, not say. If there is adequate interest and feedback, this series can encompass topics such as suicide, CPR, hospice and more.

Thank you for beginning this discussion with me. Soon, we will look at Living Wills and other documents that each of us needs to have in place. Meanwhile, I would like to hear your initial reaction/thoughts regarding our approaching this subject together.

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“Madame, all stories, if continued far enough, end in death, and he is no true story teller who would keep that from you.” Ernest Hemingway

Minnie III

Minnie?

Along with the coming of this new year was the realization my mother would have been 100 years old this June. I do not regret she did not live to see this birthday, because she stopped being Minnie at about age 78 when dementia robbed her of just about everything she enjoyed. I will never forget the day I realized my mother was no longer always at home in her body or mind. I had noticed small changes, some confusion on occasion and short term memory lapses, but with a busy life and demanding career, I somehow had not realized the significance. Then one day, I stopped into Shear Paradise, a small hair salon in Taylorsville, to give Mom a message. She had been dropped off there by my stepfather who had gone on to run errands. I sat with her and we chatted for about ten minutes or so. She smiled pleasantly while waiting for her turn to have her hair “done,” which was her routine each Saturday as it was for many women of her age in that era. When I got up to leave, she took my hand, looked into my eyes and said, “Honey, I’m sorry, but I don’t know who you are.” I was shocked beyond belief and after introducing myself to my own mother, I sat in my car and cried while my heart was breaking. Never had I considered this happened to folks nor how it would feel.

In many ways Alzheimer’s Disease robbed her of the simple pleasures of daily life, such as looking forward to visits, savoring memories of those visits and sharing the events of her lifetime. In other ways it may have protected her from the knowledge of losses she had experienced, such as the death of my father just before his 70th birthday when she was only 61. However, in a misguided effort to orient her, I honestly answered her questions repeatedly. “Is Richard gone? Did Leroy (my stepfather) die, too? Can’t Mom and Dad visit me one day soon?” Over and again, I reinforced her loved ones were dead, her parents could never come to see her. It was cruel that she had to hear this sad news repeatedly. If I had it to do over, I would dodge such questions and say whatever might have reassured her. Truth, usually important, was not under these circumstances, I realized too late.

Still Minnie

Mom always had a good sense of humor. She liked to laugh. She didn’t mind being teased, in fact probably enjoyed it, as long as folks were laughing with her. She also liked to sing and did not let lack of training or talent discourage her. Some of these personality traits endured in perverse ways even as dementia robbed her of memories. Once in the 90s when we were visiting her, the television news was blaring in her room. There was a great deal of coverage regarding the current president’s personal affairs and Mom seemed very interested in following the reporting. When I suggested we turn the TV off, or at least lower the volume, she protested she needed to see President Clinton, insisting there was something she wanted to give him. When one of her visitors asked what she wanted to give to the President of the United States, she replied, “An enema!” I never figured out if this was serious or her way of entertaining the room full of visitors, but she laughed along with us as I assured her probably many Americans would be in favor of her gift for the President.

On another occasion there was a talent show at the nursing home and Minnie chose to sing, “Amazing Grace,” a hymn she knew well from all the years she had attended church. While she was singing her heart out a cappella, one of the other residents kept interrupting. He seemed to have taken a coughing fit that worsened the longer the hymn kept going. I’m not sure he was the only one who was reacting adversely to Minnie’s singing. After about three verses, Minnie stopped, slowly unfolding her hands and then placing them on her hips. She then shouted at the top of her lungs, “SHUT UP!” A slow murmur rose, turning into a hearty laugh rippling through the caregivers present and Minnie’s solo became the talk of the place for days to come. 

My Beautiful Mother

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Dementia affects 13.9 percent of people age 71 and older in the United States*. There is nothing funny about Alzheimer’s Disease or any other form of dementia, but it is a fact of life and as Americans live longer and baby boomers make up a larger portion of the population we must learn better how to deal with it as families and as a society. This is just a tiny bit of information about our experience and I believe Minnie would not mind my sharing her stories if it might help you to deal with this tragedy in a more hopeful manner. Please feel free to comment about your own firsthand knowledge on this subject.

* Source: https://www.alz.org/downloads/Facts_Figures_2014.pdf