Thoughtful Catholic approach to conversations about end of life care

I had the opportunity today to read a very thoughtful article about a meeting of Catholic physicians who are helping their very ill patients to wrestle with hard decisions about whether to utilize palliative care in place of active treatment with mechanical life support. The organization is the Catholic Health Association of the United States (CHA) and the online newsletter article in the section on Physicians Articles is called  “Pathways to Convergence: EXAMINING DIVERSE PERSPECTIVES OF CATHOLICS ON ADVANCE CARE PLANNING, PALLIATIVE CARE, AND END-OF-LIFE CARE IN THE UNITED STATES,” subtitled ” Untangling the Gordian Knot of Language and Attitude about Palliative Care and Advance Care Planning: Pathways to Convergence,”

The article reports on the findings that stemmed from a 2015 initiative in which the Pew Charitable Trusts “gathered a group of six Catholic ethicists who worked in and with the Catholic health ministry from a variety of perspectives. All of them served as resources to help organizations in the ministry remain faithful to and compliant with Catholic teaching. Serving as a kind of steering committee, this initial group sketched out a framework for a project that would look at three main topics in Catholic health care” [including] …”:3. the specific issues and decisions made by patients and families and providers in the setting of living with serious illness and, ultimately, dying from it.”

The article goes on to report thatPathways to Convergence, a project supported by The Pew Charitable Trusts, enabled a broad array of clergy, clinicians, practitioners and ethicists to explore Catholic perspectives on these issues for more than a year. Participants engaged in a series of in-depth conversations on how Catholics accompany the sick and dying, how end-of-life medical decisions are made and what role the church has in promoting its message and vision in the public square. It was acknowledged at the outset that although Catholics share many strongly held views that converge, they also hold divergent views and practices that cause confusion and misunderstanding. The project was established with the hope that, through a respectful exploration of the convergence and divergence of views, participants could recognize a path forward that would enable Catholics to speak more clearly and distinctly about these issues to one another and to others as well. …”

Discussions between physician and patient, or patient and nurse practitioner, about care at end of life are challenging, sensitive, and fraught with the difficulty of accepting certain medical inevitabilities without giving up hope. One’s concept of what constitutes good life at end of life must be explored. Individuals can sign advance directives, and patients or their authorized proxies can confer with physicians about POLST – Physicians Orders for Life Sustaining Treatment — that become part of the medical record both in and out of the hospital. Above all, the issues need to be explored with the team that is important to the patient, which will often include clergy as well as health care personnel and trusted family members.

 

Call us for advice on personalized advance care senior planning … 732-382-6070

Hospital’s Failure to apply for charity care for psychiatric emergency patient leaves hospital holding the bag

DRAFT   MUST REWRITE    text from daily briefingHEALTH CARE LAW

New Jersey has a Charity Care program which pays for hospital care for uninsured individuals who meet the stringent income and asset requirements and also file an application. If an eligible individual enters the hospital as an emergency room admission, the hospital is required to prepare and submit the application and to take measures to obtain the necessary verifications. If an individual is admitted to the hospital without first going through the emergency room, on the other hand, the individual bears that responsibility. The application can be filed by the individual or a responsible party and the hospital, at its discretion, can accept the application up to two years after discharge, which is also the deadline for a hospital to submit the claim to the state program for processing. The regulations are found at N.J.A.C. 10:51-11. This issue was addressed in the recent Appellate Division decision of Newton Med. Ctr. v. D.B.

The patient had been  involuntarily committed to the hospital’s short-term care facility on an emergent basis when the county PESS determined that he was a danger to himself and others. He met the financial qualifications for charity care, and filled out an application. However, due to his condition, he did not submit all the needed documentation within the required time period, and evidently did not seek the help of another person to gather and submit the required verifications. The hospital eventually sued him for the substantial unpaid bill. He argued that the hospital had a duty to submit the application on his behalf because his emergency psychiatric hospitalization placed him in the same category as a medical patient coming in through the emergency room. Although the trial court ruled against him, the Appellate Division reversed.

In a decision which discusses in depth the history and purpose of the Charity Care Program, the court held that the statute did not explicitly limit the category of emergency room hospitalizations  to medical needs as opposed to  psychiatric need, and that the Legislature intended that all patients in such desperate straits who enter a hospital for emergency treatment be relieved of the responsibility to submit their own applications. The Court placed the responsibility upon the hospital staff to follow the procedures mandated in the regulations for all such patients, and dismissed the collections action.

Admission to any hospital  raises the need for a patient to have an advocate and assistant watching out for his or her interests. Careful planning with powers of attorney, records release authorizations, HIPPA authorizations and health care proxies, including psychiatric health care proxies, can add a layer of protection for an individual in the throes of severe illness.

Call us for advice on elder & disability issues … 732-382-6070

A happy day in Guardianship Court: Restoration

Today I had the great fortune to participate in a case in which a person who has been under guardianship for six years had their capacity restored in full.  This kind of situation doesn’t often happen, but it’s really fabulous.

This case started in 2010 when the parent and sibling came to me in an emergency to report that their loved one who I’ll call “X” had suffered a burst aneurysm and a stroke, and was in a coma in the hospital. The hospital advised that they seek guardianship, as there was no power of attorney or health care proxy in place. We filed the necessary papers, and the parent was appointed Guardian. The “ward” — a former executive with huge responsibilities at a major New Jersey corporation —  required extensive hospitalization, but eventually arose from the coma and was released. “X” had a very slow improvement in high level intellectual ability. Also, “X” had various lower body physical handicaps including partial paralysis and required a lot of hands-on assistance.

The family was utterly devoted, and with each year, “X” got stronger and more of “X’s” intellectual processing returned. At one point, “X” asked us to go back to Court, as “X” wanted to revoke “X’s” prior Will and make a new plan. That was accomplished, with the help of the “ward’s” court-appointed attorney. The Guardian and family continued to assist the “ward” with challenging exercises and tasks to help “bring the brain back.”

Finally, the Guardian contacted me and basically said “we think that “X” is ready to regain control of all decisions about their life. “X” has physical handicaps, but “X” can handle those with amazing specialized equipment which “X” knows how to use, and “X” will ask for help when necessary.” So we filed the necessary Verified Complaint with supportive medical reports, and today, following a hearing, the Judge granted “X” restoration of full capacity.

Pursuant to N.J.S.A. 3B:12-57.g.,  Guardians are required to encourage the ward to participate in decision-making “in order to encourage the ward to act on his/her own behalf whenever s/he is able to do so, and to develop or regain higher capacity to make decisions in those areas in which s/he is in need of guardianship services, to the maximum extent possible.” The incapacitated person has the right to petition the court for modification or termination of the guardianship, R. 4:86-7(a)(6),  and the Guardians have the duty under N.J.S.A. 3B:12-57f(10) to institute such legal actions as the “ward” could institute. How is that done? By filing a formal Verified Complaint and order to Show Cause with the court who has jurisdiction over the guardianship, supported by medical proofs and other relevant evidence.

Needless to say, “X” was grinning from ear to ear to receive the Judgment of restoration. So was the Judge … they rarely have the opportunity to see such a fantastic recovery by a person under guardianship.

Call us for advice on guardianship, conservatorship, power of attorney and elder law …. 732-382-6070

 

 

What to do when you think it’s time to refuse further treatment

If you are the Guardian of the Person or the designated Health Care Representative for a person who is extremely mentally incapacitated, there may come a time that you may face that most dreadful of decisions. You may wonder whether to treat all new medical crises. The person you are responsible for may have advanced Alzheimers or other dementia, may be incapable of expressing themselves, or may be functionally incapable of interacting in a knowing way or performing any physical act without assistance. This is a delicate matter. There are intertwining considerations of law, bioethics and even religion, and a heavy burden is placed on the health care decision-maker.

These decisions aren’t necessarily restricted to the ones involving life-preserving measures like installation of a gastric feeding tube, pacemaker, or respirator (ventilator), or decisions about whether to embark on kidney dialysis or performing major surgery such as a liver transplant or non-laporoscopic heart valve replacement. You may be faced with decisions about whether to hospitalize an incapacitated  patient for a new medical problem when the patient already has advanced and debilitating congestive heart failure or has become severely impaired by numerous complications of diabetes such as peripheral neuropathy, or extreme vision impairment. You may be wrestling with whether to subject the patient to chemotherapy or radiation treatment for newly-diagnosed cancer.

It is important to have a frank conversation with the primary physician who coordinates the care for the patient. What should be the overall goal for care at this point? If the underlying chronic conditions will never get better and will certainly continue to get worse, is it time to just keep the patient comfortable and as pain free as possible in their bed, and avoid hospitalization? Anecdotally, I have been told by nurses who have years of experience with patients who have long-term advanced dementias that they observe patients experiencing  disassociation and disorientation  each time the patient is hospitalized, and they report that although the treatment stabilizes the patient  for a short time, there may be no no overall improvement in the underlying degenerating condition . The health care decision-maker often feels that their patient is suffering as s/he goes through a new round of  tests, tubes, needles  and exams. Yet there is a natural assumption that if a person has a degenerating condition which periodically flares into a medical emergency (such as congestive heart failure or COPD), each new episode should lead to hospital admission for acute care.

If your patient is living in a nursing home, have a frank discussion with the treatment team, especially the nurse and doctor who have who primary responsibility for the patient. I have attended such meetings with my clients over the years, and they are difficult but important. Ask about how to obtain a Do Not Hospitalize (DNH) order and what it would cover. For instance, a fracture may need to be set outside of the nursing home. Find out about the broad array of comfort treatment that can be provided within the nursing home such as IV antibiotics and oxygen. Ask the doctor about issuing a DNR (do not resuscitate) order in the chart.  Make sure that the patient is never sent to the hospital without your advance notice and consent. Make sure that the treatment personnel do not give the patient any legal forms to sign. And complete a green POLST form for the chart which sets out your wishes for the goals of the patient’s care.

For advice and advocacy in carrying out your role as surrogate medical decisionmaker, call us at ….732-382-6070

Thwarted by HIPPA rules? Persevere.

Protected health information can’t be  disclosed to anyone but the patient or the patient’s authorized recipients.  If you are the court-appointed Guardian of an incapacitated person, or you are a designated Agent under a Health Care Proxy or Health Care Power of Attorney, you may have encountered roadblocks in trying to get access to the records of the person you are acting for.  These protections of confidentiality were always a matter of common law but were explicitly set down in the Health Insurance Protection and Portability Act of 1996, usually called “the HIPPA Law.” The law allows the patient to sign a HIPPA-compliant records release. The law also explicitly states that a Guardian is an authorized recipient, and that the designated Health Care Proxy/ Agent/ Representative is an authorized recipient. Nonetheless, even if you are authorized, you may hit roadblocks getting access to the medical records of the incapacitated person.

I encountered this recently and I have to say it was just maddening. I have been  the Legal Guardian [of Person and Property] for a certain individual for about 15 years. Two months ago he had a serious injury and was admitted to the hospital. The patient has been in that hospital before and I thought that my guardianship record had been placed on the chart. Arriving at the hospital on the weekend without my guardianship certificate, I discovered that they could not check the prior charts, and of course would give me no information. At 7:30 Monday morning, I faxed up the guardianship certificate with a request that the nurse or doctor call me. By mid-day  I had heard nothing and when I called in I was told that those faxes go to a central fax room and don’t get delivered right away [though I had faxed it to the direct line at the nurses’ station]. This whole process had to be repeated and finally a day later I was able to have a telephone meeting with the treatment team. Then he was back in the hospital, and on arrival at the hospital a few mornings later the floor nurse wouldn’t allow me to review the patient’s chart, citing HIPPA, and I had to again provide the certificate because they still hadn’t actually entered this critical information into the patient’s chart.   Even with that it took several conversations until the nurse was persuaded that I had authority to not only see the chart but to make the decisions and sign the Consents to Treatment. When the patient was discharged to an outside  subacute facility, the hospital didn’t provide this guardianship information with the transfer paperwork and I had to start it all over again. When he went back to the hospital, a new chart was being created and again, they found no record of my guardian status. Start again.

The usual Health Care Power of Attorney appoints a decision-maker to make the medical decisions if the doctors determine that the patient is incapable of giving informed consent. A good document will also say that its effectiveness is not diminished by the mere passage of time, and it will also grant HIPPA access to information. However, if the patient isn’t incapacitated, the patient may still have to sign a new HIPPA authorization in order for the treatment team to be willing to share information with you. That wouldn’t install the person as surrogate decision-maker at that point, but it would give them access to necessary information in order to be able to assist the patient to make decisions about treatment. Here is a downloadable PDF of a HIPPA-compliant form which we provide to all of our estate planning clients. HIPAA FORM.

The moral of this story is: (1) always bring the original guardianship certificate or health care power of attorney to the health care facility with you, (2) get an updated guardianship certificate one a year so that it is reasonably current; (3) if you are the health care proxy but your person isn’t mentally incapacitated, ask him or her to sign a medical release authorization and place it in the chart so that you can have access to information.

Call us for legal advice concerning the appointment of health care representatives and functioning as a guardian or power of attorney ….. 732-382-6070