What is the mission of the Ethics Committee?

The committee functions as an advisory and educational resource.  Its goal is to be a        helpful forum for staff and others to process difficult end-of-life ethical issues facing patients, families and the hospice organization.

What does the Ethics Committee do?

The committee has a three-fold purpose:
1.      Education: to serve as a resource for staff, patients and families concerning end-of-life ethical issues and as a forum for interdisciplinary dialog on a broad range of concerns, questions and problems.

How often does the Ethics Committee meet?

The committee meets at least six times per year on a bimonthly basis (third Monday of       month).  Ad hoc meetings can also be called, as needed.  Committee members sign a statement attesting to their recognition of and agreement to the confidential nature of the meetings.

Who can submit cases or issues to the Ethics Committee?

Committee members, patients, families and staff are encouraged to submit cases and issues for discussion and feedback.  They are also invited to attend the meetings and to enter into discussion.  Cases, agenda and non-member attendance are determined by the chairperson of the committee.

Who are members of the Ethics Committee?

Membership in the committee is granted by the President/CEO of Hospice of the Comforter.  Members participate with no limits set on terms of service.  The normal attrition of members allows for new members to be added.  Members are chosen on their qualifications, particularly the ability to think critically and to discuss cogently.  The equal status afforded all members enables the committee to draw upon diverse backgrounds, perspectives and experiences.

Who are the members of the Ethics Committee?

Mike Caroline (chaplain/chairperson); Lee Tenaglia (Nursing/vice chairperson); Michael Lawhorn (chaplain/secretary); Vicki Wilkinson (psychosocial counselor); Robert G. Wilson (administration);  Dr. Michael Keil, Ann Park (psychiatrist); Jeanette Carpenter Schreiber (health law attorney) Sandy Graves (psychologist; former HOTC board member); Steve Allison (volunteer); Helen Baker (family member); George Colombo (family member).

SUMMARY OF SOME CASES REVIEWED BY THE ETHICS COMMITTEE

TPN (Total Parenteral Nutrition) Case: The family of Mrs. B. decided to pursue TPN treatment (intranvenous feeding) upon the request of a son in prison.  Through the facilitation of our psychosocial counselor he was able to visit his mother in the family home.  This son had some religious perspectives about pursuing all possible treatments.  As a result of the family decision to use TPN, the patient revoked her hospice benefit and chose to pursue this treatment.  The patient died in less than two weeks after discharge as a patient of another hospice.

Discussion: The review of the patient’s chart showed that it is possible that the decision for TPN was the choice of the family rather than a reflection of her wishes.  We discussed the health risks, monitoring complexities and high costs of TPN.  We also talked about what could have been done differently.  When dealing with complex cases, we should have a “can do” attitude.  We need to be as flexible as possible and to weigh the various factors of each case, so that we do not abandon patients/families in the final days of life.  In short, treatments, such as TPN, can be compatible with our treatment plans in various circumstances.

Outcome:  The committee suggested that HOTC have a “discharge committee” to review and respond to complex cases.  (May 19, 2003)

Palliation Case: The husband of Mrs. L. and her hospice team presented her case involving palliative sedation.  The patient was in her mid 40s and had ALS.  She was much loved by her husband, her 17-year-old daughter, her family and friends.  Increasingly she had difficulty with breathing, even with the help of bi-pap.  She also had struggles with eating.  A feeding tube was inserted at her request.  After much discussion about palliative sedation and various family meetings, Mrs. L. decided to use the sedation.  She had personal time with family and friends for final words, and then the medication was administered for palliation.  Eventually her bi-pap was removed by her husband, and the patient died peacefully.

Discussion: The husband of Mrs. L. said that he could not imagine dealing with the death of his wife without the help of the hospice team.  The team also praised the strength and goodness of Mrs. L. and her family.  We discussed the various facets of this case, including treatments (the use of bi-pap and feeding tube) and the educational process used with the family concerning treatment options and the various dimensions of palliative sedation.  The committee concluded that things were done well.

Outcome:  HOTC will continue to talk about the options for palliation at the end of life and to respond to the desires of patients/families.  Presently, however, there is some question related to state law about the qualifications needed for a nurse to administer palliative sedation.  Until these matters are clarified, HOTC will give palliative care, but avoid the use of the term “palliative sedation”.  (November 21, 2005)

Question of Abuse Case: The hospice team of Mrs. W. presented this case.  The patient is a 80-year-old woman, weighing approximately 75 pounds.  She is diagnosed with failure to thrive and with Parkinson’s disease.  She has urinary and fecal incontinence, and she lives with family.  Actually there are two families living together with a total of 10 children.  Hospice staff has concerns that the patient has had uncared for hygienic and nutritional needs.  The team has some questions about possible neglect.

Discussion: The patient is on Medicaid and could be placed in a nursing home.  The family, however, wants to keep the patient the home.  At times the caregiver seems overwhelmed with the responsibilities of caregiving.  CNAs come on a daily basis, but at times no one answers the door.  The ethics committee discussed how neglect does not have to be deliberate to be reported.  The committee also talked about how to support the family for better caregiving.  Our role is to seek to be an ally with the family for better caregiving rather than having an investigative stance.

Outcome:  The ethics committee recommended that volunteer help be considered to give some periodic relief to the caregiver.  We also encouraged the continuation of CNA support.  Finally, the hospice team was reminded that reporting abuse is the last resort and that no one reports to DCF until they bring the case to the President/CEO.  (January 16, 2006)

Drug Abuse Case: The hospice team presented a case of a 37-year-old male with lung cancer.  The patient has a history of deception and drug abuse.  He has also had conflicts with people trying to help him, including hospice staff.  He has signed a contract with the HOTC team to receive a controlled amount of medication (Dilaudid) for pain relief.  If the patient “loses” any pills, he will be given Methadone in its place.  So far this contract has worked rather well.

Discussion:  The committee talked about how much time and energy goes into caring for challenging patients.  The case manager shared how she tries to be firm and caring.  She tries her best to get along with the patient and to treat him with respect, as she does for all her patients.

Outcome:  The committee praised the committed efforts of the team in this difficult situation.  It also affirmed the implementation of the “contract”, which facilitates responsibility and accountability.  (March 20, 2006)

Pacemaker Deactivation Case: The hospice team presented the case of a 93-year-old woman who wants to deactivate her pacemaker because she is tired of living and ready for death.  She is a competent and independent woman.  She has been with hospice for over two years and is totally bedbound because of a broken hip.  She seems to be emotionally and spiritually prepared to make this decision.  She also has some rising financial concerns related to her care and the health-care of various family members.

Discussion: The committee voiced an understanding of her situation and her ethical autonomy to make a decision about her life and the removal of the life-sustaining device.  Her particular pacemaker is 100 percent active for the maintenance of her heart.  Thus, there is the possibility that death may come rather quickly, if the pacemaker is deactivated.  The committee discussed the need for continued conversation with the patient and her family about the ramifications of her decision.  It also discussed how the patient has the ethical right to make her decisions and how others have their own ethical decisions concerning participation involving principles of beneficence and non-maleficence.  The committee noted that it is more common for patients to discontinue ventilator and dialysis, but more pacemaker cases may present themselves in the days to come.

Outcome:  The ethics committee recommended the development of a document which will delineate the decisions of the patient and her full and conscious consent, as well as communication with her family.  The hospice doctor, involved in the case, will analyze her cardiac situation and what would be involved in the deactivation of her pacemaker.  The hospice team will have conversations with the patient about a plan of care after deactivation of the pacemaker, if the patient decides to do so.  Ultimately, a number of realities evolved in this case.  On 11/28/06 the hospice doctor was notified that the pacemaker company had backed off its original offer to shut off the pacer, if the patient chose to do so and with signatures by the hospice attending doctor and the cardiologist.  The cardiologist refused to sign off on the deactivation because the patient was alert and oriented and not at a critical end of life situation.  The ethics committee learned several lessons in this case: deactivation of defibrillators is quite common in hospice situations, but deactivation of pacemakers is less common and more complex.  Thus, we need to be clear and careful in conversations with patients and family members.  Deactivation of a pacemaker can cause physical suffering and other medical complexities.  Our policies seem to be appropriate in these regards, but we want to keep open to ongoing developments in the hospice world concerning possibilities and complexities when dealing with pacemaker deactivation. (January 15, 2007)

Patient Neglect and Child Abuse Case:  A hospice team presented the case of a young mother with cervical cancer and four children ages 12 to 4.  The husband was charming, but eventually discovered to be controlling and abusive.  As time progressed, the team realized that he was negligent in the physical care of his wife, as well as the nourishment and supervision of his young family.  The hospice staff discussed the complexities of this case on the team level and with appropriate supervisors.  Efforts were made to work with the father and to offer additional hospice support.  Finally, there was a documented incident of physical harm to the oldest daughter.  The patient also began to express some of her fears of the husband.  The physical abuse situation was reported to the Florida Department of Children and Families (DCF).  The children were removed from the house by DCF and moved to safety.  Hospice staff also helped the mother to find safety and eventually was reunited with her children out of state.  The hospice case manager helped the patient to fly to safety and to connect with another hospice.

Discussion:  Four representatives from the Florida Department of Children and Families, as well as pertinent hospice team members, were invited to the ethics committee meeting.  These people and the committee members reviewed the use of the terms of abuse, neglect and exploitation, and they looked at the HOTC policies and procedures in these regards.  Then, the hospice team members presented details and a chronology of this case.  The DCF people explained how they do their work.  They are glad to answer questions and to respond to needs.  In summary, protective investigators receive a report to investigate cases through the abuse hotline.  An investigator attempts to see the reported victim(s) within 24 hours of receiving the report.  If the report needs an immediate response, an investigator will respond immediately and will contact law enforcement once the investigator determines that there was abuse.

Outcome:  In this particular case the hospice team members said that DCF was helpful with the children, but not as helpful with the safety of the mother.  It seems that perhaps hospice staff need to be clear on reporting the separate needs of both the children and the mother.  It is also possible that DCF focused on the children and allowed HOTC to take the initiative with the mother.  Fortunately things worked out as well as possible.  The patient and the children found safety together out of state, and another hospice gave care until the death of the patient.  The ethics committee learned that DCF is willing to help with appropriate cases and that there is a right time to work together.  The consensus of the committee was that the hospice team handled this case in an appropriate and professional way.  Contact with DCF can be made through: Abuse Hotline 1-800-96-Abuse and Domestic Violence Hotline 1-800-500-1119. (July 16, 2007)

Crisis Care Case:  A hospice nurse and two people from the crisis care office presented a case involving an 84-year-old man with prostate cancer.  He was a hospice patient for a number of weeks and eventually had symptoms of agitation.  Crisis care was begun, but after a couple of days his condition stabilized.  The nurse communicated clearly with his wife that her husband no longer fit the criteria for extending crisis care.  The wife expressed her anger and disappointment.  Because of her advanced age and small stature she said that she could not care for her husband without help.  The social worker got involved to talk about options of family support or perhaps movement to a facility.  The wife did not want to bother her family and refused the option of a facility placement.  As the days unfolded, the wife reported our hospice to Medicare.  In the end family did come to help; our hospice continued to give good care; and the patient died peacefully.

Discussion:  The ethics committee and the presenting hospice personnel discussed an article entitled, “Avoiding the Pitfalls of Continuous Care”.  Some of the pitfalls are: starting continuous care for patient who doesn’t need it; not starting continuous care when it is indicated; and the patient or family becomes overly dependent on hospice staff.  They also discussed the particular details of the presented case.  The various roles of nursing, psychosocial counseling and chaplaincy were examined.  The conclusion was that the hospice team made significant efforts to communicate clearly and to respond to the needs of the patient and caregiver.

Outcome:  Various learnings came out of this case.  It is important to communicate clearly from the very beginning the parameters and criteria for crisis care.  It is meant to be a short-term intervention to help with medical, psychological or caregiver issues, which are justified and documented.  We also realized the importance of the “interdisciplinary team approach” with each part performing its role in communication and care.  Hospice personnel must also be well aware of the criteria and regulations concerning Medicare and insurance coverage.  People from the crisis care office are preparing materials, which will be placed in the admissions packet to help with the clarifications and information concerning crisis care.   (September 17, 2007)

Bipolar Disorder Case:  A psychosocial counselor from the Blue Team shared a case of a woman with cancer and a bipolar condition.  Her sons support her financially, but struggle with her on the personal level because of her responses to them.  They have been hurt by her words and actions over the years.  Thus, there are complexities concerning caregiving and compliance with hospice medications.  The patient is competent and strong willed.  She does not take medications for her bipolar disorder and at times has been confused about taking hospice medications.  The patient also has voiced a desire and plan to take her life by suicide.  At one point the hospice counselor was part of having her Baker Acted and hospitalized.  Initially the patient was very angry with hospice, but now she is more in control of her emotions and actions.  The hospice staff tries to keep in good communication with the patient and to support her compliance with the hospice plan of care.  Significant efforts have been made to help with the finding of a caregiver.  One person was willing to help, but the patient eventually fired her.  Another person gave some care, but the family had questions about her reliability.  In short, the hospice team is making the best of a difficult situation.

Discussion:  The ethics committee highlighted the importance of “hanging in” with as much support and help as possible.  A committee member spoke about how sometimes we have to wait for the physical progression of the dying process to get to the point where a patient is more compliant with hospice care and the help of others.  Finally, the committee stressed the importance of teamwork and communication around the plan of care.  Some patients are challenging to help, but the hospice team can be significant in their care, when other things are breaking down or caregivers are burning out.  There was also some discussion about whether there could be some professional consultation, when difficult mental health cases emerge.  We will probably be dealing with more of these cases, as the number of hospice patients increases. (November 19, 2007)

Homeless Patient and Hospice Care:  A case manager and psychosocial counselor presented a case of a 32 year old homeless woman, who is diagnosed with HIV and has other health issues.  The patient was referred to hospice from jail.  She is “free core” and drops out of sight for weeks at a time.  The hospice nurse and counselor look for her, as they travel through various areas of their territory.  The patient also has some friends, who give information on her whereabouts.  The hospice staff makes its best effort to help with her needs.  One of the complexities for helping her with hospice and social services is confusion about her Social Security number and her use of various names.

Discussion:  The ethics committee discussed the challenges of serving this patient and others like her who are homeless.  They are often isolated and hard to find.  They are typically suspicious of others and are without caregivers.  They often refuse placement or consistent care until their symptoms reach a critical stage.  Finally, the administration of drugs and other treatments present challenges.  All things being said, our hospice approach is to do our best because some care is better than no care.

Outcome:  The ethics committee praised the nurse and counselor for their committed care of this patient.  They are making significant efforts to build trust and to help.  They also are using the broader team concept of hospice to serve in this difficult context of hospice care.  (January 21, 2008)

Sibling Disagreement about Patient Care:  A psychosocial counselor and patient care coordinator presented the case of a 91 year old woman, residing in an ALF, with end stage COPD and dementia.  Her local son was identified as DPOA by the admissions nurse, and there were two daughters living out of state.  The patient eventually went to the hospital because she was not eating. A hospice doctor met with her son, and it was determined that nutrition and hydration would be discontinued because the patient did not want heroic measures.  The son began getting pressure from his sisters saying that more should be done for the mother.  Eventually it was discovered that the POA form did not include information about medical decisions.  The son also had a copy of the “Five Wishes” form, but hospice staff discovered that it was not witnessed correctly.  A DCF investigator was called in, who said that the daughters could sue and that the ALF could be held liable, if feeding was discontinued.  Meanwhile the patient continued to decline and to choke on all foods.  The son was notified that feedings were stopped and that mouth care and ice chips were implemented.  There was also a conference call with hospice staff and the two daughters.  The daughters stated that they felt that the brother wanted the patient dead for financial reasons and that they wanted an IV for their mother immediately.  After more consultation with a hospice administrator, the IV was approved to be started that evening, but the patient died peacefully later in the evening under crisis care nursing.

Discussion:  The ethics committee looked at the various dimensions and factors involved in this case.  It was agreed that it was complicated because of the disagreements within the family and the inadequate Advance Directives.  Hospice was concerned about “the best interests” and best medical care for the patient.  Decision-making power, however, rested in the family.  According to Florida Statutes there is an order of priority for “proxy” decision-making.  Under 765.401 (e) the adult sibling of the patient or, if the patient has more than one sibling, a majority of the adult siblings, who are reasonably available for consultation, has power to make decisions.  The ethics committee recommended that greater scrutiny be given to the documentation for Advance Directives to avoid eventual conflicts and confusions.  The committee also encouraged the use of the gifts of the interdisciplinary hospice team so that families in conflict can listen to each other, voice their concerns and eventually make the best decisions for the welfare of their loved one.

Outcome:   A representative from AHCA made a visit to HOTC to follow up on a complaint.  He reviewed the electronic records and hard copy charts of three patients, who expired during a two-week period.  He also requested the “complaint logs” for that time period.  When his review was completed, he said that he was not issuing any citations.  He suggested that we obtain and review copies of Advance Directives as soon as possible at the time of admission to determine who has the legal authority to make decisions. (March17, 2008)

Nutrition and Hydration Case:  This case involved a family in conflict concerning the withdrawal of nutrition and hydration because of persistent vegetative state.  The patient was a 76-year-old male, who was married and had three adult daughters.  He had no advance directives, so according to Florida statute his wife had priority as healthcare surrogate.  His wife said that her husband made it clear that he would not want to exist in a vegetative state.  He made this clear in conversations with her and with many of his friends.  His daughters, however, favored the continuation of nutrition and hydration, while pursuing treatment possibilities and getting other opinions.

Discussion:  Through the input of Hospice of the Comforter staff, who worked with this case, the ethics committee heard about how the patient had an accident leading to this situation.  He had traumatic brain injury, as well as some spinal injuries.  He went to a hospital for a frontal temporal parietal craniotomy.  Eventually he was moved to a Select Specialty hospital.  Finally, he was admitted to the Hospice House.  During his stay, family disagreements were apparent, and there was a family meeting with hospice personnel, family members and an attorney of one of the daughters.  The daughters verbalized that they felt that their dad could be rehabilitated.  No physician had told them that their dad was in a vegetative state.  With input from HOTC staff, as well as the HOTC CEO, it was recommended that the patient be moved to a local hospital for neurological evaluation by two independent neurologists.

Outcome:  The role of our hospice staff was to be an instrument for the family to discuss various options and to communicate with each other toward a good conclusion.  The hope was that the family could keep connected through the challenges of this situation.  This would include supplying information for good decision-making.  Because of a comment from a doctor early in the case, the daughters believed that their father could be rehabilitated.  The wife concluded that these efforts would be futile and that the will of her husband was to die without extensive efforts in the midst of an irreversible condition.
The physicians, who evaluated the patient at the hospital, concluded that the patient was in persistent vegetative state and had no potential for rehabilitation.  In light of this certification the patient was readmitted to the Hospice House, where he died peacefully with comfort measures and the withdrawal of nutrition and hydration.  The ethics committee concluded that the hospice staff made their best efforts to help this family and to serve the patient.  The committee also appreciated the opportunity to reflect on this important and complex case.  (May 19, 2008)

Discontinuance of Dialysis Case:  A hospice physician and a psychosocial counselor presented the case of a 64-year-old man who has been on dialysis for 14 years.  His hospice diagnosis was renal failure.  He entered hospice talking about his desire to discontinue dialysis because of family struggles and legal frustrations.  After retirement he lived with one of his daughters and eventually realized that she was draining his financial assets.  Another complexity was that he was placed under a “guardian” because of decision making difficulties after a heart surgery.  Presently he is very clear and capable in conversation, but he has found himself caught under the control of the guardian.  He made some efforts to break out of this control, but he was not successful.  Thus, he admitted that he was considering ending his life by the discontinuation of dialysis.  Medically he is doing well with dialysis.

Discussion:  The team physician and psychosocial counselor said that the patient made it clear that he would like to keep living, if he could regain control over his life.  He was also open to the help of hospice in confronting some of the financial, legal and family concerns. The ethics committee discussed the possibilities of dealing with his depression.  They also said that sometimes depression is a normal response to difficult situations.  The committee spoke of respecting the autonomy of the patient and his right to decision-making.  It seems that through the listening and caring of the interdisciplinary hospice team the patient began to reclaim some of his power and dignity.  A central concern of the hospice team and the ethics committee was whether we would be helping him to end his life, if he chose to discontinue dialysis because of outside pressures rather than physical realities.  

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