HERE’S WHAT I LEARNED WHILE HELPING A FRIEND IN HOSPICE:
1. A patient’s advance directives and treatment wishes may be disregarded.
2. Alert patient advocates at the bedside 24/7 are essential.
By Joan
In 2017 I had the privilege of being asked to become my friend John’s healthcare agent. (An “agent”, sometimes called a “proxy,” is someone legally appointed by a person to make his medical decisions in the event he is unable to make his own decisions.) John’s health had been declining for several years. Ultimately, he received a terminal illness diagnosis. (Please note that I am in no way suggesting individuals should wait until that point to assign an agent; this should be done when one reaches the age of 18!)
John had a twofold reason for choosing someone other than a family member. First, we shared the same faith, and he trusted that I would adhere to the tenets of our faith. Second, John was worried about being terminally sedated (i.e., rendered unconscious, deprived of food and fluids, and dying of dehydration and starvation). I was aware that terminal sedation is an increasingly common threat in hospice and would be alert to it.
John’s family was not pleased that he named me to be his healthcare agent. In retrospect, I believe part of their concern was that I would request “heroic” measures to keep him alive at all costs. This, of course, was neither John’s goal nor mine; John simply stated he wanted to die in God’s time and not be “hurried along.”
Scare tactics
When John began to need more help, he received in-home hospice care. The nurse seemed to be caring and respectful of John’s faith, but she made statements (reported to me by John) that caused me to question if that was truly the case. Also, the hospice social worker (Paul) became very angry with me for not persuading John to sign a DNR/DNI (do-not-resuscitate/do-not-intubate order) early on. All of the usual scare tactics were employed (“They’ll pound on you, they’ll break your ribs,” et cetera).
I attended a meeting at which Paul again attempted to persuade John to sign such a document. When John declined, Paul literally shouted at him, “When you’re dead, you’re dead!” I suspect he really wanted to yell at me. Perhaps Paul was under pressure from his employer, but shouting at a patient to scare him into signing a DNR/DNI order is a tactic no professional should stoop to using. (John told me those same words were used on him during an earlier meeting.)
John and I had discussed this document and had agreed he would authorize it when he felt it was time. John was very capable of speaking for himself; therefore, it was not my role as his agent to contradict or pressure him.
The pitfalls of a POLST
Another issue of contention was John’s advance directive. This had been filled out and witnessed well in advance of John entering home hospice care. The hospice staff wanted him to sign a POLST (Physician Orders for Life-Sustaining Treatment). This form has dangerous wording and loopholes and it overrides a person’s previously signed advance directive. I explained the pitfalls of such a document and John refused to sign it. Again, the staff was unhappy with me.
John eventually reached the point of needing 24-hour care. Lacking the funds for such care at home, he would need to enter a hospice facility. Paul previously found a nonprofit hospice that did not charge for their services and John was agreeable to entering. The catch was that he couldn’t even get on its waiting list without signing the POLST. Attempting to protect John, I amended the POLST, but the hospice would not accept the amended form.
It should be noted that on the day before John was admitted to the hospice facility, he was still using a walker to navigate around his house. Once admitted, a catheter was inserted and, to the best of my knowledge, he did not leave his bed again.
During the initial meeting at the hospice, I told the nurse doing the intake that I did not want a psychotropic drug administered to John since he was not combative nor was there any other indication that it was appropriate. (This was in accordance with advice I had received from several individuals in the healthcare field, one of whom has a doctorate in nursing and over a decade of direct experience in hospice.)
This request was ignored, so I met with the doctor who was doing rounds later that week and voiced the same request. Again, the request was denied. I subsequently met with the medical director who, after disagreeing with me, finally ordered a different drug. I later learned he merely exchanged one psychotropic drug for another.
I attempted to revoke the POLST they forced John to sign and to have him treated according to his advance directive, but he died before that was accomplished. His death occurred a mere two weeks after admission to the hospice facility.
Unlike the family members mentioned in a previous issue of HALO’s newsletter, who were able to be with the patient 24/7 (https://newsletter.halorganization.com/2019/03/a-family-may-be-only-hospice-team-needed), John’s family did not agree with my concerns and did not feel the need to be with him around the clock.
All of this has shown me first-hand the importance of the patient advocacy program HALO recommends (https://newsletter.halorganization.com/p/patient-advocacy). It takes only a few people who are willing to become patient advocates to help ensure a patient’s safety and comfort.
Note from HALO: Signing a POLST, or any other advance directive or medical order, should always be voluntary. Also, according to the national POLST website (https://polst.org/about), “The POLST form can be changed or voided at any time. It is up to the patient what they want their POLST form to say.” Nevertheless, many hospices, hospitals, and nursing homes disregard federal and state laws and regulations regarding advance directives, DNR orders, and patients’ rights. And, as in John’s case, a healthcare facility may use a POLST to override a patient’s advance directive and even disregard a competent patient’s wishes regarding medical treatment.
The powerful healthcare system is difficult to stand up against, but we must do our best, as Joan did, to protect patients unable to protect themselves. At least they will know someone truly cares about their welfare.
To learn more about the POLST document, read “ADVANCE DIRECTIVES FOR HEALTHCARE, Part Two: The Dangerous POLST Form” at https://newsletter.halorganization.com/2018_11_12_archive.
As this case illustrates, healthcare providers may wrongly disregard a patient’s advance directive. Nevertheless, an advance directive in which you appoint an agent (proxy) gives you an ally who will do his or her best to express your wishes regarding medical treatment and to defend your best interests. Also, a life-affirming advance directive is a great tool for educating everyone involved in decisions regarding a patient’s treatment and care.
For information about the medical directives HALO recommends, click on this link: https://halorganization.com/pdf/LAMP.pdf. The Life-Affirming Medical Proxy (LAMP) document is available for download there. The introduction to the document includes a list of “Life-Affirming Principles for Medical Decision-Making” which HALO highly recommends discussing with your agent (proxy), family members, and healthcare providers.