Something to Consider

In the past, we discussed end-of-life decisions. Please review some of the resources and information provided during that series on Death.

https://crookedcreek.live/2017/01/25/death-decisions/

One of my readers made an important point in a personal discussion we were having today and I feel it is worth mentioning here.

During the current COVID-19 pandemic many more patients are being put on respirators (ventilators) to assist in breathing. Many, if not most, will recover and are again able to breathe on their own. They are discharged to fully recover.

For some, this may be a reason to re-think one’s Living Will or written instructions for a health care surrogate.  If your legal document(s) currently says, “no ventilator,” is this still your desire?

This is a valid point and I present it for your consideration.

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Graphic by Pixabay

Tip Re’ Tires

Confession

I know nothing about tires, other than they need to be kept inflated. My tip is more about what to do to prepare for car trouble which came about for me recently because of tires. After more years of driving than I care to calculate I had my first blowout a couple of weeks ago. Oh, I’ve had flats, they are not that dramatic, but a blowout, now that is pure drama! I’m happy to say that I maneuvered my car safely to a stop in an emergency lane. After collecting my thoughts and calming my nerves for a minute I called AAA, grateful as I looked at my card to note I’ve been a member for 29 years. I was sure help would be on the way in no time flat (pun intended). That’s where the tip comes in. 

The Tip:

For one hour I sat waiting for help to arrive to place my spare on my wheel so that I could be on my way. One hour! It was 91 degrees so I was thankful to have adequate fuel to use the A/C intermittently. I read everything on my phone and had to resist calling anyone to chat because I didn’t want folks to be concerned about me. But I had nothing to do, nothing to read . . . wait that is not exactly true. 

I opened the glove box and rooted around finding the vehicle registration, an owner’s manual and insurance verification. BORING! Then I spotted two white envelops which I had forgotten having in the car. One contained a copy of my Living Will and the other a copy of my Health Care Surrogate document.  https://crookedcreek.live/2017/01/25/death-decisions/  Realizing that I had not updated these papers in over a year, I spent that long wait reading, initialing and dating each page so that my time was productive after all. This is not what I recommend but it was a good alternative to having something more interesting to read.

Yeah, back to the tip: I now have good reading material in my car. I’m ready for any emergency. Don’t leave home without something to read in case of an emergency! 

“I had to stop driving my car for a while… the tires got dizzy.” Steven Wright

Theme photo in title by Pixabay

 

Death-Hospice

Follow Up

To follow up on important topics from the last post in this series, please read the comments left by “Lula.” Remember that little black bubble at the end of each post?  fullsizeoutput_9edJust click the bubble on Death Decisions (Jan. 25, 2017) to read the important information she has shared with us. 

Lula shared interesting information about a service which sounds like a good idea for anyone, but especially those who travel often. I am not familiar with Living Will Registry, but you can read about Lula’s own experience as a frequent traveler (in her comments) as well as reviewing the service Online.*

One issue that Lula mentioned is Emergency Medical Services (EMS), when called to a home, will likely begin CardioPulmonary Resuscitation (CPR), even if one has a Do Not Resuscitate (DNR) order on a Living Will. I have always heard the same thing, but an official form** in this state (KY) is meant to address this problem. You should check with your own state, city and/or county for the law where you live. Regardless of one’s current health status it would be helpful to fully understand the guidelines before a need arises. It is understandable this is a potential for problems. The very fact EMS is called indicates an emergency and they come prepared to do what is necessary to save lives. If one has a terminal condition CPR is not likely an appropriate response, but it is unfair to expect emergency personnel to make that distinction or take that responsibility. 

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Hospice

Having Hospice involved in end-of-life care can often prevent such situations from occurring. Hospice is a national organization with local offices across the US, providing palliative care to patients facing advanced illnesses and to their families. Palliative care involves relieving pain and enhancing quality of life (as opposed to addressing a cause and/or cure) and may be provided in the home, special centers, extended care facilities or special units within an acute care hospital.

When Hospice care began gradually in the US, during the second half of the Twentieth Century,  there were specific parameters regarding how long a patient was expected to live in order to be admitted into palliative care. Although this is no longer the case, it is a lingering belief and can make it hard for families to approach the subject. I personally feel Hospice is extremely valuable in providing clinical, pastoral and grief support as well as practical assistance with medical supplies, equipment and even volunteer and respite care. Extensive information is available from National Hospice & Palliative Care Organization*** (NHPCO).

Possibly many of you used Hospice services for your family or maybe a close friend and I invite you to share your experience with us if you are comfortable doing so. I will share that in my experience with loved ones the service was not instituted soon enough. In one case, incredulously, it was not possible to get the physician to admit the patient was dying and by the time a referral was made the patient only lived a few hours. The other personal case was just the opposite. The physician recommended, even urged, Hospice service, but the patient wanted to wait a little longer, not realizing the time would approach as quickly as it, in fact, did. In each case the patient did not receive care that would have perhaps eased their passing. I painfully share this hoping it might prevent others from waiting too long. 


Websites referenced:

*Living Will Registry http://www.alwr.com

**KY DNR Form http://manuals.sp.chfs.ky.gov/Resources/sopFormsLibrary/Do%20Not%20Resuscitate%20Form.pdf

***NHPCO http://www.nhpco.org


Coming Up

We will look at Funeral and Burial Planning in the next post. I realize this may be a bit too pushy, but if you are so inclined how about working on writing your own Obituary before then? Then we will work together. Your participation is great and makes our experience together so much richer. Thank you!


“I find it delightful that the optimal way I can live my life from moment-to-moment is also the optimal way I can prepare for my death, and equally delightful that acknowledging our future death is a prerequisite for living a truly joyful life now.”  Ram Dass, Still Here

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.

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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.


“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