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 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?
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:
- Do you want treatment withdrawn except for pain control?
- Does that include withdrawal of food, water?
- What about a DNR (do not resuscitate) order?
- 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.
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
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:
- Access to your medical record
- Right to choose your health care providers and long term facilities
- 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.
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.
“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