RECENT MEDICAL TROUBLES, THANKSGIVING 2020

November 29, 2020 David Dodd

A few days ago I received a very unexpected call from Beverly’s facility, telling me that there were problems with her heart. And did I want them to take her to the Emergency Room at the hospital? I was visiting my daughter on the East coast so it was difficult to get directly involved. The idea was that the ER could do an immediate diagnosis, whereas waiting for EKG, xrays, and special lab work could be done at the facility, though a few hours slower. My answer was “Yes” until my daughter backed me off. She thought I should wait to talk with the physician as ERs are dangerous places in these covid times, ERs are especially traumatic for a dementia person, etc. So we waited for the physician to contact us.

To be appropriately brief, the final answer that day—from EKG, Xrays, and blood work—was that she had fluid in her lung, including a pulmomary embolism (blood clot in the lung) that impacted the heart (rapid beats and irregular rhythm), left her very weak, etc. All of this had been preceded by an infection some weeks before, which was treated by three rounds of antibiotics. And there was an enduring weakness that put her in a wheelchair. I had not been informed about the wheelchair when it first occurred. But when I learned of it, I was on the phone nearly every day requesting getting her walking as much as possible. This immobilization likely contributed to the bigger problem of the lung. The clot precipitated a much greater weakness for her. Further, the clot also impacted the functioning of her heart. And, when the physician said that she may have only a 50% chance of surviving this difficulty, I was certainly frightened. As we know, blood clots move around and, going from a lung to the heart is potentially fatal.

So the best approach was to deal with the clot with antibiotics and blood thinning drugs plus a drug that would settle down the heart issues . Happily, the next day she was improving; the usual measures of bodily function were normal. And she “resisted being examined,” which struck me as a positive sign, one we could all laugh at. Multiple consultations with the physician and regular calls from nurses were, from that time on, encouraging.

Note that, on my first call with the physician about the diagnosis from the EKG, etc., we had a conversation about her wishes expressed previously in a Medical Will/advance directive. The papers were in her file at the facility. Among the issues were: She chose not to have IV feeding, IV antibiotics, and other interventions. That was violated with the first round of antibiotics which was IV; I supported that action as it was short term and responding to an acute situation. Also she did not want medical intervention if she could no longer recognize family and friends. It has been increasingly difficult, in these covid times, to know who she does recognize as there are no normal interactions or normal evaluation of her capacities in that regard. But I can say that there is some indication of recognition of me—limited but there. In any case, the conclusion was that the treatment should continue. And, over a couple of days, she was improving and she was likely to return to previous levels of functioning. However, the long-term use of blood thinners raises issues of the balance between eliminating the dangerous clot and the risks of excessive bleeding from falls/accidents.

This story is here to remind us all of the many issues facing those of us caregiving for dementia.

First, we now manage the life and death of our loved one. She, who was once an extremely competent nurse, can no longer make decisions about her own illnesses and treatment. We must decide as if we were her.

Thus every caregiver should have an Advance Directive for their loved one (and for themself), as early in the process as possible. The complete Utah form follows my writing on this blog, for convenience and at least as a guide. Do not wait until the person with dementia no longer has the capacity to make judgments about a directive. Utah has a useful standard form as a starting point, as do other states, no doubt. And consider any additions that you might make. Be prepared for strange reactions from your loved ones. Once, a few years after both of signed Advance Directives, I raised the issue of expressing her wishes on a video. I was explicitly accused by her of “wanting to kill me.” That was an emotional wreck of the moment, one I then kept trying unsuccessfully to bring back to reasonable by explaining what I meant. I should have followed the simple rule of leave it and they will forget.

And, if too late for an Advance Directive, families (and friends, if appropriate) should work together to set up some reasonable principles for these decisions. And record it in some form, as a legal document signed by all. Either way, such a document should be available to hired caretakers and facilities. Such a document is an issue if 911 is called for an ambulance or paramedics. Once these folks arrive, their entire mission, after stabilizing medical issues, is to take the patient off to the ER and the hospital. Often that may be the wrong move.

And speaking of family and friends, use them along the way as well. Where would Beverly be if I had not heard and acted on my daughter’s advice? All would be worse, for certain. Covid, other infections, traumatic stress, hospitalization, all were more than possible from an ER visit. Also family, friends may ask questions for medical answers, such as I heard: “How do we know it is a pulmonary embolism?” “Why would she be on blood thinners so long?” And the emotional support in any crisis is invaluable. When you have just been told that she/he may die, decision making capacity is reduced and stress levels are not healthy; others may help.

Further, find great medical support (physicians and nurses, etc.) and develop relationships with those folks. They are more willing to talk, answer your questions, and clarify if they know you. They care enough to review the Advance Directive issues with you. They can be honest, but kind, about what is happening to your loved one.

And events like these will happen, so be prepared. Beverly is extremely healthy for her age, but the future (even soon) is for more Medical Troubles. The brain deterioration has many other consequences. In her case, holding food in her mouth (called “pocketing”) and diminished swallowing capacity may now have caused problems in the lungs. Both of those are common with later stage dementia. She was not eating well and not drinking much either, so that dehydration added to her body failing. And then being in a wheelchair can minimize movement enough to result in clots. Stay in touch with what is happening with your loved one.

And finally, let’s remember (my opinion follows) that medical interventions are not simply about prolonging life without regard to anything else. Beverly & I both want to live as long as we can for as long a life is worthwhile. We don’t want to be unconscious or totally unaware, connected to nothing but tubes or to be resuscitated only to be no longer any kind of person. Dementia slowly takes away who we are, but she is now still a person. But I do have to be prepared to let her go when the time is right. And, as the physician reminded me in our discussion of the issues, an intervention that provides comfort (physically and psychologically) is critical in the final period. I was ready to let her go a few days ago, but fortunately this was not the time.

Here is Utah’s Advance Health Care Directive Form

(Note: It was important to both of us to have someone else to make decisions when we could do so no longer. And to specify Option 3 under Part II, which means life sustaining treatment would be withheld under certain conditions, such as: “I am close to death and unlikely to recover.”)

Utah Advance Health Care Directive

(Pursuant to Utah Code Section 75-2a-117, effective 2009 )*

Part I:

Part II: Part III: Part IV:

Allows you to name another person to make health care decisions for you when you cannot make decisions or speak for yourself.

Allows you to record your wishes about health care in writing. Tells you how to revoke or change this directive.
Makes your directive legal.

My Personal Information

Name: ______________________________________________________________________________ Street Address: _______________________________________________________________________ City, State, Zip Code: _________________________________________________________________ Telephone: (_______) _____________________ Cell Phone: (_______) _____________________ Birth Date: ____________________________

Part I: My Agent (Health Care Power of Attorney)

A. No Agent

If you do not want to name an agent, initial the box below, then go to Part II; do not name an agent in B or C below. No one can force you to name an agent.

I do not want to choose an agent.

B. My Agent

Agent’s Name: _______________________________________________________________________ Street Address: _______________________________________________________________________ City, State, Zip Code: _________________________________________________________________ Home Phone: (_______) _____________________ Cell Phone: (_______) _____________________ Work Phone: (_______) _____________________

C. My Alternate Agent

This person will serve as your agent if your agent, named above, is unable or unwilling to serve.

Alternate Agent’s Name: _______________________________________________________________ Street Address: _______________________________________________________________________ City, State, Zip Code: _________________________________________________________________ Home Phone: (_______) _____________________ Cell Phone: (_______) _____________________ Work Phone: (_______) _____________________

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Part I: My Agent (continued)

D. Agent’s Authority

If I cannot make decisions or speak for myself (in other words, after my physician or another authorized provider finds that I lack health care decision making capacity under Section 75-2a-104 of the Advance Health Care Directive Act), my agent has the power to make any health care decision I could have made such as, but not limited to:

· Consent to, refuse, or withdraw any health care. This may include care to prolong my life such as food and fluids by tube, use of antibiotics, CPR (cardiopulmonary resuscitation), and dialysis, and mental health care, such as convulsive therapy and psychoactive medications. This authority is subject to any limits in paragraph F of Part I or in Part II of this directive.
· Hire and fire health care providers.
· Ask questions and get answers from health care providers.
· Consent to admission or transfer to a health care provider or health care facility, including a mental health facility, subject to any limits in paragraphs E or F of Part I.
· Get copies of my medical records.
· Ask for consultations or second opinions.

My agent cannot force health care against my will, even if a physician has found that I lack health care decision making capacity.

E. Other Authority

My agent has the powers below only if I initial the “yes” option that precedes the statement. I authorize my agent to:

____YES ____ NO Get copies of my medical records at any time, even when I can speak for myself.

____YES ____ NO Admit me to a licensed health care facility, such as a hospital, nursing home, assisted living, or other facility for long-term placement other than convalescent or recuperative care.

F. Limits/Expansion of Authority

I wish to limit or expand the powers of my health care agent as follows:

_____________________________________________________________________________________________________

G. Nomination of Guardian

Even though appointing an agent should help you avoid a guardianship, a guardianship may still be necessary. Initial the "YES" option if you want the court to appoint your agent or, if your agent is unable or unwilling to serve, your alternate agent, to serve as your guardian, if a guardianship is ever necessary.

____YES ____ NO I, being of sound mind and not acting under duress, fraud, or other undue influence, do hereby nominate my agent, or if my agent is unable or unwilling to serve, I hereby nominate my alternate agent, to serve as my guardian in the event that, after the date of this instrument, I become incapacitated.

H. Consent to Participate in Medical Research

____YES ____ NO I authorize my agent to consent to my participation in medical research or clinical trials, even if I may not benefit from the results.

I. Organ Donation

____YES ____ NO If I have not otherwise agreed to organ donation, my agent may consent to the donation of my organs for the purpose of organ transplantation.

Name: ______________________________________________

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Part II: My Health Care Wishes (Living Will)

I want my health care providers to follow the instructions I give them when I am being treated, even if my instructions conflict with these or other advance directives. My health care providers should always provide health care to keep me as comfortable and functional as possible.

Choose only one of the following options, numbered Option 1 through Option 4, by placing your initials before the numbered statement. Do not initial more than one option. If you do not wish to document end-of-life wishes, initial Option 4. You may choose to draw a line through the options that you are not choosing.

Option 1

I choose to let my agent decide. I have chosen my agent carefully. I have talked with my agent about my health care wishes. I trust my agent to make the health care decisions for me that I would make under the circumstances.

Initial

Option 2

I choose to prolong life. Regardless of my condition or prognosis, I want my health care team to try to prolong my life as long as possible within the limits of generally accepted health care standards.

Initial

Additional comments:

Option 3

Initial

I choose not to receive care for the purpose of prolonging life, including food and fluids by tube, antibiotics, CPR, or dialysis being used to prolong my life. I always want comfort care and routine medical care that will keep me as comfortable and functional as possible, even if that care may prolong my life.

If you choose this option, you must also choose either (a) or (b), below

Initial

(a) I put no limit on the ability of my health care provider or agent to withhold or withdraw life- sustaining care.

Initial

(b) My health care provider should withhold or withdraw life-sustaining care if at least one of the initialed conditions is met:

If you selected (a), above, do not choose any options under (b).

I have a progressive illness that will cause death

I am close to death and am unlikely to recover

I cannot communicate and it is unlikely that my condition will improve

I do not recognize my friends or family and it is unlikely that my condition will improve

I am in a persistent vegetative state

Additional comments:

Option 4

Initial

I do not wish to express preferences about health care wishes in this directive.

Additional comments

Name: ______________________________________________

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Part II: My Health Care Wishes (continued)

Additional instructions about your health care wishes: ________________________________________________________________________________________________________ ________________________________________________________________________________________________________ ________________________________________________________________________________________________________

If you do not want emergency medical service providers to provide CPR or other life sustaining measures, you must work with a physician or APRN to complete an order that reflects your wishes on a form approved by the Utah Department of Health.

Part III: Revoking or Changing a Directive

I may revoke or change this directive by:

¨ Writing “void” across the form, burning, tearing, or otherwise destroying or defacing this document or directing another person to do the same on my behalf;
¨ Signing a written revocation of the directive, or directing another person to sign a revocation on my behalf;
¨ Stating that I wish to revoke the directive in the presence of a witness who: is 18 years of age or older; will not be appointed as my agent in a substitute directive; will not become a default surrogate if the directive is revoked; and signs and dates a written document confirming my statement; or
¨ Signing a new directive. (If you sign more than one Advance Health Care Directive, the most recent one applies.) Part IV: Making My Directive Legal

I sign this directive voluntarily. I understand the choices I have made and declare that I am emotionally and mentally competent to make this directive. My signature on this form revokes any living will or power of attorney form naming a health care agent that I have completed in the past.

______________________________ __________________________________________________________________

Date Signature

________________________________________________

City, County, and State of Residence

I have witnessed the signing of this directive, I am 18 years of age or older, and I am not:

Related to the declarant by blood or marriage;
Entitled to any portion of the declarant's estate according to the laws of intestate succession of any state or jurisdiction or

under any will or codicil of the declarant,

A beneficiary of a life insurance policy, trust, qualified plan, pay on death account, or transfer or death deed that is held, owned, made, or established by, or on behalf of, the declarant;
Entitled to benefit financially upon the death of the declarant;
Entitled to a right to, or interest in, real or personal property upon the death of the declarant;
Directly financially responsible for the declarant's medical care;
A health care provider who is providing care to the declarant or an administrator at a health care facility in which the

declarant is receiving care; or
8. The appointed agent or alternate agent.

_________________________________________________

Signature of Witness

_________________________________________________

Street Address

_________________________________________________

Printed Name of Witness

______________________ _________ _____________

City State Zip

If the witness is signing to confirm an oral directive, describe below the circumstances under which the directive was made.

________________________________________________________________________________________________________

Name: ______________________________________________

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