Jim is 79 years old and resides in a county nursing home in Pennsylvania. He has needed a wheelchair for over two decades due to advanced MS, with a history of severe decubitus ulcers, recurrent respiratory infections and severe urinary tract infections (UTI). A stalwart pro-lifer and deeply committed Catholic, Jim desires to follow the teachings of his Church regarding end of life care. He accepts his suffering and actively offers it up for the pro-life movement and the salvation of souls. He has always asked for a full code (cardio-pulmonary resuscitation) and everything that may prolong his life because he knows the value of suffering and the desperate need for sacrifice in this fallen world. In the past, he has declined the nursing home’s requests to fill out a Living Will,[i] preferring to have a friend, a fellow pro-life activist, serve as his medical decision-maker. Jim appointed this friend to be his legal agent in a Health Care Power of Attorney (HCPA).[ii] This has worked well for coordinating his care in the past.
In December of 2013, without his agent’s knowledge or consent, the nursing home required Jim to fill out and sign a POLST form, explaining that their institution and parent company now require this of all their patients. In retrospect, his agent noticed that she had started receiving fewer and fewer calls about Jim’s care since the New Year. Many in health care fields have noted that, once a POLST is obtained, the agent named in a HCPA is sidelined when it comes to critical care decisions. [Note: Generally, an agent makes medical decisions for the patient only when the patient is incapable of making them for himself. However, a person may stipulate in his HCPA that his agent be involved in all medical decisions even when the person is competent.]
Jim was hospitalized for UTI and sepsis in late August 2014, his fourth hospitalization this year. When he returned to the county home, the staff encouraged him to change his status to a DNR (do not resuscitate). Jim has struggled with his DNR (do not resuscitate) decision for a while. According to his agent:
Whenever he comes back [to the nursing home], as part of procedure, they ask if he still wants a full code. This time he told me that it would be easy to say no to a full code.
I sensed a change in his attitude, so today I went to visit and talk with him. His question: Is the DNR the best decision in his case when there is a choice of full code to continue serving the Lord in suffering? If the Church says that a DNR order is appropriate in Jim’s case, which is more pleasing to God? He began to talk about not wanting to be on the first floor of [the nursing home] because that is where you are when you have a ventilator. He feels that he would be so isolated there and the quality of life he enjoys now, with being able to have a Rosary group and especially take care of Father [his roommate], would be gone. Would he be wrong to say no to the ventilator? He sees this as trying to avoid suffering.
After careful consideration, Jim chose a DNR status. In discussing the options, his agent was made aware that Jim had filled out a POLST in December, not comprehending the implications of the form for his health care decisions. His agent explained the problems with POLST forms and obtained another HCPA form, had it signed and notarized. She and Jim presented the new HCPA to the nursing home staff, requesting it be placed in his chart and the POLST be made null and void. The nursing home refused, stating that it is their facility’s policy to have a completed POLST form in the chart for every patient. As a compromise, Jim and his agent requested the POLST form be amended to indicate DNR status but with “Full Treatment.” The nursing home staff again refused, stating they did not permit a DNR status in conjunction with the “Full Treatment” option; it could only be used with the “Limited Treatment” POLST option.
Jim’s agent contacted me for assistance. I joined her for a follow up meeting with the Director of Nursing and Social Worker. A printed copy of the following letter, with the Federal and State rules and regulations regarding advance directives, were provided to the staff (bold and underlining added for emphasis):
Federal law (2006)] prohibits health facilities from requiring anyone to execute an advance directive, including POLST:
Code of Federal Regulations
Title 42 ‘ Chapter IV ‘ Subchapter G ‘ Part 489 ‘ Subpart I ‘ Section 489.102
Requirements for providers.
(a) Hospitals, critical access hospitals, skilled nursing facilities, nursing facilities, home health agencies, providers of home health care (and for Medicaid purposes, providers of personal care services), hospices, and religious nonmedical health care institutions must maintain written policies and procedures concerning advance directives with respect to all adult individuals receiving medical care, or patient care in the case of a patient in a religious nonmedical health care institution, by or through the provider and are required to:
(3) Not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive;
(4) Ensure compliance with requirements of State law (whether statutory or recognized by the courts of the State) regarding advance directives. The provider must inform individuals that complaints concerning the advance directive requirements may be filed with the State survey and certification agency;
2012 Pennsylvania Consolidated Statutes, Title 20 – DECEDENTS, ESTATES AND FIDUCIARIES Chapter 54 – Health Care, Section 5428 – Health care instruments optional, § 5428, states: “A health care provider…may not: (1) Require an individual to execute an advance health care directive or order…as a condition for…receiving health care services…”
Furthermore, the National POLST Paradigm Task Force (see www.polst.org, “FAQ”) states, “Remember, the use of a POLST form is always voluntary.” [Emphasis in original]
§ 5425 specifically states, “If a provision of an advance directive conflicts with a provision of another advance health care directive, the provision of the instrument latest in date of execution shall prevail to the extent of the conflict unless the instruments expressly provide otherwise.”
Obviously, the POLST conflicts with the latest advance directive, Jim’s new Health Care Power of Attorney, and is therefore not enforceable.
Section § 5444, in regard to a Living Will, says: “A revocation is effective upon communication to the attending physician or other health care provider by the principal or a witness to the revocation.” This also applies to any advance directive, because section § 5459 also permits revocation of a Health Care Power of Attorney. This law obviously applies to all advance directives and POLST is a directive for health care, so it can be revoked/replaced by another advance directive (e.g., a Health Care Power of Attorney).
Based upon this documentation, the staff agreed that, in principle, the facility cannot require a POLST in every patient’s file. In Jim’s case, they also agreed to fill out his POLST with both DNR status as well as “Full Treatment.” They agreed to consult the HCPA agent for all medical decisions, regardless of the POLST. Finally, they agreed that for any patient or responsible party opposed to POLST, some other form of advance directives should be available. As of this writing, unfortunately, Jim’s POLST is still in effect.
[i] “Living Will” is a type of health care advance directive defined in Pennsylvania law (Title 20, Chapter 54): “A writing made in accordance with this chapter that expresses a principal’s wishes and instructions for health care and health care directions when the principle is determined to be incompetent and has an end-stage medical condition or is permanently unconscious.”
[ii] “Health Care Power of Attorney” is defined in Pennsylvania law (Title 2, Chapter 54): “A writing made by a principal designating an individual to make health care decisions for the principal.”