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

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

Palliative care in a nursing home setting

A person who moves into a nursing home is referred to as a “resident” for a reason — this is their new home. At the end of life, the health care representative (or the patient himself) may be wondering whether there is a way to ensure that he can “die at home” in his bed instead of in a hospital.  Paving the way for a quiet end will require teamwork and collaboration between the health care decision-maker and the nursing home’s decision-makers.  Here are some tips.

The Centers for Medicare and Medicaid Services (CMS) issued a specific, lengthy, updated policy on this issue. ” The facility is required to establish, maintain, and implement written policies and procedures regarding the residents’ right to formulate an advance directive, refuse medical or surgical treatment and right to refuse to participate in experimental research. In addition, the facility is responsible for ensuring that staff follow policies and procedures.” The policy goes on to state: ” RIGHT TO REFUSE MEDICAL OR SURGICAL TREATMENT. If a resident (directly or through an advance directive) declines treatment (e.g., refuses artificial nutrition or IV hydration, despite having lost considerable weight), the resident may not be treated against his/her wishes. If a resident is unable to make a health care decision, a decision by the resident’s legal representative to forego treatment may, subject to State requirements, be equally binding on the facility. A facility may not transfer or discharge a resident for refusing treatment unless the criteria for transfer or discharge are otherwise met.

”  If a resident’s refusal of treatment results in a significant change in condition, the facility should reassess the resident and modify the care plan as appropriate. The facility is expected to assess the resident for decision-making capacity and invoke the health care agent or legal representative if the resident is determined not to have decision-making capacity. Once the decision-making capacity is assessed, the facility is expected to determine and document what the resident is refusing, to assess the reasons for the resident’s refusal, to advise the resident about the consequences of refusal, to offer pertinent alternative treatments, and to continue to provide all other appropriate services. The resident’s refusal of treatment does not absolve a facility from providing other care that allows him/her to attain or maintain his/her highest practicable physical, mental and psychosocial well-being. For example, a facility would still be expected to provide appropriate measures for pressure ulcer prevention, even if a resident has refused food and fluids and is expected to die.”

What can the advocate do? The health care representative needs to find out what the nursing home’s policy is about “Do Not Hospitalize” orders (DNH). Are there certain circumstances in which the facility will require a transfer to the hospital? If the patient stops eating, and weight loss is inevitable, and the patient had previously signed an Advance Directive/Living Will, how will the nursing home accommodate a request to refuse a feeding tube?  What are the facility’s obligations to patient safety? Discuss the process for periodic revision to the  Plan of Care so that the Goals of Care are simply “comfort care” rather than “treatment” of new conditions? Find out the process for utilizing palliative care. Find out how to make sure that every single member of the nursing staff will know that the patient is never to be transported to a hospital in the event of respiratory arrest, cardiac arrest, refusal to eat, etc. Of course, make sure that the physician has entered a DNR (Do Not Resuscitate) order in the patient’s chart. Also, discuss the process by which the facility would normally call in a medical specialist; the patient has the right to refuse such unnecessary evaluations if the goal is “no treatment.”

Each case is unique, and the goal is for the entire team – family, nursing, social services – is to aide the patient to fulfill their wishes and remain as comfortable as possible as the end approaches.

Call for advice and representation in elder care planning and end of life planning … 732-382-6070

Even in a nursing home, palliative care can be used to ease the way at the end of life

When a person moves out of their home and moves into a nursing home for their long-term care, they become a resident at the facility, because the long-term care facility (LTCF) is their new home. The resident  will receive mail there, can submit an absentee voting ballot from there, receive personal visitors and telephone calls there. This is why federal law and state law are couched in terms of “Resident’s Rights” rather than “Patient’s Rights.”

Many articles and studies can be found which show that at the end of life, people have a preference to die at home. If the “home” is a nursing home, facilities must develop an individualized care plan that is geared to the particular resident’s needs and goals. If the goal is comfort and avoiding medical interventions, the care plan can be worked around a palliative care plan which takes into account things such as inevitable weight loss, avoiding the insertion of a feeding tube, and treating the symptoms without requiring hospitalization to detect the cause of a condition (such as a fever). The health care proxy can refuse medical evaluations when detecting the cause will only lead to treatment which is unwanted. The point of palliative care is comfort care and the avoidance of a hospitalization, which can be a traumatizing transition for a resident that can lead to further complications and unwanted interventions.

The Centers for Medicaid and Medicare Services (CMS) publishes the RAI as the methodology for long term care facilities to assess and develop services. Look at page 1-9 in particular, section c.: “Identification of Outcomes—Determining the expected outcomes forms the basis for evaluating resident-specific goals and interventions that are designed to help residents achieve those goals. This also assists the interdisciplinary team in determining who needs to be involved to support the expected resident outcomes. Outcomes identification reinforces individualized care tenets by promoting the resident’s active participation in the process.” CMS MDS and RAI nursing home (May 2013)

The resident’s doctor can issue standing Orders for the resident’s chart such as an out-of-hospital DNR (Do Not Resuscitate) or a DNH (Do Not Hospitalize). The health care proxy (and the resident, if possible) should have a discussion about the LTCF’s policy on Do Not Hospitalize orders. Under what circumstances would the facility require that the resident be transferred to an acute care facility? Insist on a thorough exploration with the facility’s team to determine what alternatives the Home can offer that would keep the resident comfortable, keep the other residents safe, and enable the resident to remain “at home.”

These techniques can help the health care representative carry out the resident’s wishes. A great deal of thought needs to be put into such planning, because health conditions can take unexpected turns. As always, creative advocacy based in the law is the key to success.

For legal advice and representation on elder care issues and nursing home care plans, call us at 732-382-6070