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Medical Decision Making for Publicly Conserved Individuals:Policy
by Theresa Drought
|Does your county have policies related to health care decisions or end-of-life treatment?||17||14|
|Is a permanent probate conservator routinely given the power to give consent for medical treatment?||23||8|
|In your county, does a conservatorship of the "person" include the making of health care decisions?||23||8|
|May a conservator consent to "do-not-resuscitate" orders without a special court order?||18||13|
|May a conservator consent to withdrawing respirators and/or feeding tubes or other life-support without a special court order?||12||19|
|Have you ever made use of an ethics committee related to any of the services you provide for your clients?||15||16|
|Have you seen areas of breakdown in communication or otherwise between health care providers and public guardians?||22||9|
Several areas of communication breakdown were identified in the survey:
- "Physicians have refused to complete the forms we require in order for us to gather information to make the decisions."
- "Conservatees have made their end of life wishes known in writing prior to conservatorship (i.e., no tube feeding) and documents that state their wishes aren't always transferred with them ."
- "Resistance at the acute hospitals to allow Conservator access to hospital records."
2. Timely communication
- "Health care decisions made without consulting with conservator. "
- "Difficulty in contacting/communicating w/health care providers. "
- "Changes in condition not communicated to Public Guardian.
- "In my opinion, health care providers try to get around decisions guardians make if the care provider disagrees with it."
- "Physicians do not always share sufficient information with Conservator."
- "Inability of physicians to make decisions because
of fear of lawsuits, leaving the public guardian to take on
full responsibility for the decision instead of it being a
medical decision backed by legal authority."
4. Lack of understanding of other's role.
- "Different perspectives on the issue. "
- "Misunderstanding by the health care providers of the need for declarations needed for legal backup and support for the decision."
- "In general, hospitals know little about our authorization in these areas."
- "Health care providers don't understand that we are not medically qualified to make such decisions. It appears they sometimes attempt to pass on potential liability for such decisions."
What is especially fascinating is that similar complaints related to documentation, timely communication, distrust, and poor understanding of the other's role are consistently expressed when meeting with medical personnel on these issues. In interviews with and at meetings of health care providers, physicians complain of PG documentation requirements that require unambiguous statements about dynamic situations rife with uncertainty; delays created by what they consider to be unnecessary documentation practices; unresponsiveness and general difficulty in reaching PGs; a distrust of the PG ("have they ever even seen this patient?"); a failure on the part of the PG to share pertinent information about the patient's past wishes; failure to make timely decisions; unwillingness to accept and act on their (the PG's) role as surrogate decision maker; inappropriate deferral to MD of decision-making responsibilities; insistence on inappropriate care; the PG acting as if he or she had the authority to write medical orders; and seeming abandonment of the patient as death approaches (refusal to consent or refuse consent to treatment, refusal to meet with MD or ethics committee, refusal to return phone calls, refusal to come see patient). As one provider said, "If a family acted this way, we'd consider calling adult protective services to have the patient conserved."
The county policies that we examined demonstrate a variety of interpretations and responses to the requirements of the law (see Appendix Four). The policies are primarily concerned with authorizing Do Not Resuscitate or Do Not Attempt Resuscitation orders (DNAR). They also allow some limitation of aggressive treatment when death is imminent. However, they do not capture any type of long range planning (frequently called advance care planning) for known or possible eventualities.
Let's examine the issue of Do Not Attempt Resuscitation orders. The convention in current health care settings is that cardiopulmonary resuscitation is performed on any person who dies in a health care facility with the hopes of returning them to life. Even when a death is expected, unless a DNAR order is written, resuscitation will be attempted. This is not a requirement outlined specifically in the law, it is a requirement based upon hospital policy and community standards. Cardiopulmonary resuscitation was designed as a means of reversing sudden death attending acute myocardial infarction (heart attack), drowning, electrocution, or poisoning with agents that suppress respiration. It has very poor efficacy, 15% of people on whom it is performed survive to leave the hospital. For heart attack patients, that number can approach 40%, for individuals with multiple chronic illnesses it is usually less than 5%. We interviewed PGs from four counties and examined the policies on authorizing DNAR they provided to us. The policies we examined use language arguably from the Barber case to guide their processes in authorizing a DNAR order and none make reference to or utilize the provisions of the HCDL or refer to Wendland. One policy requires "an exact statement to include: that patient is in a coma or persistent vegetative state (PVS) and there is no reasonable possibility of returning to cognitive or sapient life." This language appeared in Barber in the finding that there is no criminal liability for a doctor to remove life support at request of wife and children. However, it is uncommon that dying patients are either comatose or in PVS even as death approaches. And it is difficult to equate withholding CPR as death approaches to the removal of life support from someone in a coma. Physicians are understandably uncomfortable making a legal attestation of the required statement when the patient does not meet the neurologic criteria for PVS or coma yet is unresponsive and unequivocally dying. The other counties' policies have similar language even though it is widely accepted in clinical practice that DNAR orders are the standard of care as a patient approaches an inevitable death.
The PG policies around decision-making are generally reactive rather than proactive and are limited in their ability to address the myriad difficult and complex clinical issues encountered at the end of life. None of the PGs we interviewed had policies for planning in advance for issues that are likely to come up in the future. The decision-making policies seem to be oriented toward providing affirmative consent to requests for treatment as they arise rather than managing and anticipating the inevitable needs of the patient as chronic illness progresses or ensuring an informed consideration as to whether a particular course of treatment serves the individual's interests. The policies provide for homogeneous and legally defensible documentation practices rather than providing for a process of timely and complete communication and joint decision making with the health care providers.
One county has formed an internal bioethics committee to meet on difficult cases or cases at the end of life. The committee consists of a physician/bioethicist, a chaplain, social worker, and the deputies and the PG for that county. The committee has undergone some training together and has developed policies to guide their undertaking. They review the documentation submitted by the physician as well as the deputy's representation of any discussions held with the physician, but they do not have direct involvement of anyone from the health care team in their decision making process. Instead, the group deliberates together then the deputy conveys the decision to the treating physician; there is no opportunity for problem solving or negotiation.
Another county makes sure that either the PG or the Deputy Director visits every patient for whom a DNAR is requested. They go to the patient's bedside (typically in an acute care setting) and speak with whatever staff is available. The physician must fax in a request for DNAR with an attestation that the patient is in a PVS or is permanently unconscious in order to start the process. The PG in this county finds it helpful to have input from an ethics consult, but does not feel it necessary to be involved in the actual consult and is generally reluctant to meet with the ethics committee.
All four counties we interviewed stated that they would welcome input from an ethics committee but they did not see a role in being privy to those proceedings. All stated that they try to get extensive background information on the conservatee, including interviews with family and friends, but they do not have mechanisms for sharing that information with the health care team or the ethics committee. Many we talked with had not considered that there was any reason to share such information with the medical team. Two counties routinely appoint a public defender to represent the conservatee and go to court for any request for withdrawal or limitation of treatment; the other two counties do not, stating that the conservatorship proceedings constitute court authorization for any decisions they may need to make. All these counties are governed by the same legal code.
The President's Commission for the Study of Ethical Problems in Health Care and Biomedical and Behavioral Research set out the ideal of shared decision-making in 1982. The physician brings his or her expertise on matters of diagnosis, prognosis, treatment and therapeutic alternatives, likelihood of success, and what to expect. The patient brings his or her expertise of living in the body being treated, as well as his or her values, spirituality, past experience, future goals, and personal orientation toward risk and life. The two, in negotiation, arrive at a mutually acceptable plan for care. This creates a balance between the physician's professional and personal predisposition and the patient's interest in his or her well-being. While often aligned, the physician really has little insight into the patient's conception of what constitutes quality of life. The legal doctrine of informed consent implicitly acknowledges this and requires patient or surrogate consent to the physician's recommendations. Except in cases of immediate threat to life or limb, physicians do not make medical decisions without gaining consent. This is an important point that many PGs and their deputies express some confusion about. For the publicly conserved individual, it is the PG who engages as a surrogate in the negotiation of decision making with the physician.
When a surrogate engages in decision making on behalf of the patient, he or she does not have the first hand experience that the patient has. It is assumed that surrogates selected by the patient are privy to the patient's wishes, values, goals, and attitudes. While research does not bear that assumption out (surrogates are only slightly better than chance in matching patient preferences in hypothetical decision making scenarios-patient designated surrogates have no advantage over next of kin and if there has been some discussion of values between the patient and surrogate, the level of agreement actually goes down. ) Many studies show that the patient is less concerned that the surrogate represents his or her exact wishes than that the surrogate be allowed to decide what is right in the moment. This reliance on trust and the symbolism of relationship- that the surrogate will care what happens to the person and so will make the best decision possible-is probably a truer foundation for the value of powers of attorney for health care than that the surrogate will represent the patient's previously expressed wishes.
The PG is necessarily hampered in both these areas. The PG may have little or no information about the patient's competent expression of wishes for future health care and the PG does not have a caring relationship with the patient in the manner of a family or friend. United States and California health law are strongly biased toward supporting the autonomy of the patient in making decisions. However, the person who has had a conservator appointed is, by definition, lacking in autonomy. Theories of substituted judgment, and even the definition of best interest provided by the HCDL, rely on a representation and interpretation of the individual's prior expression of values. But, to the extent these cannot be known or the individual has never had the capacity to establish them, on what is the conservator to base decisions for the conservatee?
End of life decisions challenge the PG even more. There has been a great deal of focus on end-of-life care and end-of-life decision making in the last 10 years. The National Institutes of Health recently released a State of the Science Report on what is currently known. . Two of their findings are especially pertinent:
What defines the transition to end of life?
The evidence does not support a definition of the interval referred to as end of life or its transitions. End of life is usually defined and limited by the regulatory environment rather than by the scientific data. A regulatory definition is a barrier to improving care and research relating to end of life. End of life should not be defined by a specific timeframe unless evidence can support reliable prognostication. There are individuals for whom identification of end of life is relatively clear; however, data support that this is relatively uncommon. The data demonstrate that it is not possible to accurately predict an individual's time of death.
Components of End of Life
There is no exact definition of end of life, however, the evidence supports the following components: the presence of a chronic disease(s) or symptoms or functional impairments that persist but may also fluctuate; and the symptoms or impairments resulting from the underlying irreversible disease require formal or informal care and can lead to death. Older age and frailty may be surrogates for life-threatening illness and co-morbidity, however, there is insufficient evidence for understanding these variables as components of end of life.
Policies for medical decision-making, especially decisions near the end of life, should not require a precision beyond that which medicine can provide. Instead, they should strive to incorporate and accommodate the inherent uncertainty and fluidity accompanying serious illness where statistical probabilities and usual responses are known but the individual's response cannot be known in advance. Static policy requirements specifying time frames, symptom states, or diagnoses (such as PVS or coma) will often preclude the possibility of appropriate and compassionate care responsive to the needs, values, and experience of the patient-conservatee.
In the 21st Century as chronic illness has become recognized as a major health threat, medicine is trying to move away from a reactive, crisis intervention approach toward one of evidence based practice and disease management with proactive anticipation and planning for inevitable contingencies. Sacramento Health Care Decisions developed one example of this method of decision-making for the elderly (see Appendix Five). They convened a workgroup of geriatric professionals, nursing home industry leaders, and community members to develop guidelines for decision-making in nursing homes. While developed as a guide for decisions needed at the end of life, this approach will also support good decision making at any point in life. The approach outlined focuses on identifying the patient's goals and everyday preferences. Decisions about treatment-both routine needs and unanticipated crises-are made from within the frame of the more general goals of the patient. The goals are designed to support the patient's life plan and general preferences for living rather than the narrower focus on health care alone or dying. Employing this approach would allow the conserved individual and his or her experience of life to remain firmly at the center of concern when others make decisions.
Reliance on advance directives-and attempts to increase the prevalence of advance directives within society generally-will not provide sufficient guidance for the PG. The focus on autonomy, and surrogate exercise of an individual's autonomy has limited full debate on what should constitute appropriate decisions for the non-autonomous. The law regarding decision making generally and end-of-life decisions particularly has a profound over-reliance on notions of autonomy. Rebecca Dresser has written extensively on this issue and calls for more open public debate to begin to identify the bounds of acceptable decision making by surrogates.
We believe that through open and public debate, identifiable and defensible boundaries can be delineated to guide PGs and protect conservatees. Issues of benefit and burden are complex: can the unconscious appreciate benefit or burden? Is not continuing to live ever a benefit? Can dignity, suffering, pain be quantified sufficiently to enter into a calculus of benefit and burden? Individuals will differ on the answer to the questions, but open debate will allow for a broader consensus than narrow judicial review allows. Examination of judicial decisions on these issues reflects the various positions held within society and the variety of interpretation surrounding the judicial opinions would indicate that they are not sufficient in and of themselves. The question is whether regional agreement on principles to guide decisions would provide sufficient protection to the interests of the conservatee and the liability concerns of the conservator? The consensus of our task force meetings was that if proper diversity of representation was obtained and a process of sufficient care were devised, that such a consensus could be a valuable means of protecting and guiding the decisions made on behalf of the publicly conserved as well as providing an alternative to going to court in most situations.
The National Guardianship Association has developed Standards of Practice and a Code of Ethics to guide the work of court appointed conservators. These apply to all types of guardians and conservators. These documents address the complexity of decision-making and provide guidance as to how the conservator is to approach medical decision making for the conservatee. The Code of Ethics provides a clear explication of best interest and substituted judgment standards for decision-making. It provides guides to involving the conservatee in decisions as well as validating the heavy responsibility the conservator faces when making decisions. With regard to life-sustaining treatment, however, the model code defers to state law to control those decisions. These valuable documents provide a sturdy foundation from which to begin this work.
The Standards of Practice also put concern for medical decision-making in a prominent place. Of the 22 standards, 7 address issues related to decision-making and health care. Specific guidance is provided on how to approach the decisions-supporting the conservatee's self-determination to whatever extent is possible, full and informed consent, consideration of conservatee's wishes to the extent known, criteria for best interest or substituted judgment standard, considerations in medical decision making, considerations when forgoing treatment. The standards expand on procedural steps to provide a philosophical guide to undertaking these decisions.
Based upon these documents and review of the literature, standards of practice, and existing California law, the following processes and supportive measures are proposed.
- Legislation empowers courts to support PG.
- Liability protection for good faith decisions made by PG should be considered.
- Clarification of tensions between Wendland and HCDL
- Court supports PG to make medical decisions with minimal
- Every major court ruling, from the US Supreme Court in Cruzan to the California Supreme Court ruling in Wendland, and the HCDL legislation, stress that courts are not the best place to make these types of decisions.
- There should be clearly defined criteria established and agreed upon as to when court review of PG decisions is required.
- Local administration supports PG with adequate resources.
- Maximum caseloads should be determined and made compulsory.
- Case mix should be adjusted to account for heavy medical decision-making cases.
- Availability of staff should be 24/7; administrative processes should support quick resolution when the patient's condition requires urgent response.
- Public guardian has policies to support conservator as decision-maker
or to involve PG in timely manner.
- A clear line of authority should be established for review of decisions.
- There should be clearly defined criteria as to when PG oversight of deputy decisions is required.
- Conservator knows conservatee and maximizes conservatee's
involvement in decision-making process
- After stabilization of conservatee and safe placement, in addition to discovering any advance directive, explore with conservatee values and preferences. A values history tool can be useful.
- Develop a proactive plan for monitoring and managing chronic conditions, as well as identification and plan for inevitable crises that may arise based on underlying disease states, if any.
- Involve the conservatee as much as possible in all decisions. Although the conservatee may not have the capacity to make a decision independently, she may be able to express some preferences or provide some input.
- Conservator engages in open, timely, and ongoing informed
consent/shared decision-making process with physician.
- Conservator engages in decision-making process in much the same way as other surrogate decision makers.
- In situations of great uncertainty or decisions of extreme consequence, the conservator should consult with a body or group of individuals with sufficient background and training to engage in a consultative manner to examine the best interests of the particular conservatee. The goal is to examine the generally accepted community standards in light of what is known about the individual's prior wishes, and his or her current lived experience. A real time meeting including the PG, members of the health care team, and the consultative body is most ideal. The purpose of this type of meeting would be to make sure a variety of positions and concerns are represented and examined, to achieve a moral consensus on an approach to treatment, and to advise and support the PG and the health care team in reaching a decision.
Identification of areas for legislative relief was an original goal of this project. However, after consideration of the political and economic climate in California at this time, we felt and our workgroups concurred that the remote possibility of success would not justify the tremendous amount of energy a legislative effort would require. Instead, our recommendations will focus on more modest goals. Our hope is that in the long run, these proposals will initiate changes in the practice setting that will either obviate the need for legislative change or provide clear direction for uncontroversial change.
The full list of recommendations from the focus groups is available
in Appendices Two and Three and is represented in our ideal
process outline above. The thrust of our specific proposals
for achieving those ideals is in two main areas:
- Create the capacity for shared decision making between the PG and the health care team;
- Facilitate and streamline administrative processes.
Area One-Create the capacity for shared decision making between the PG and the health care team.
We recommend an initial focus on the acute care setting for two reasons. First, there already seems to be some relationship between individual conservators and the nursing homes. Second, the most pressing issues of concern brought to our attention were in the acute care setting where the threat to life and the complexity of decisions required are more urgent. PGs should strive to develop a relationship with the acute care settings within their jurisdiction. Cultivating these relationships will facilitate communication, cooperative development of routine practices, and will better serve conservatees. Information regarding changes in the law and changes in community standards of practice will be more easily shared when these relationships have already been established.
Proposal One: Develop a relationship and shared understanding
between local health care providers, the Public Guardian, and
the Court in each county.
- Arrange opportunities for exchange: community meetings of PG, Probate Judge and County Counsel with leaders from all acute care settings in county; grand rounds by PG on required processes at all local hospitals; hospital representatives (utilization, social services, ethics, and hospital based medicine) meet with PG to review hospital processes.
- PG to develop flow diagram of processes to provide to hospitals. Should be available to hospital administration, ED staff, social services, house staff, nursing supervisor, ICU, other nursing floors.
- Hospital to provide PG with flow diagram of key hospital personnel, contact numbers, and relevant hospital policies. PG to make available to all deputies.
- Community wide education, development, and adoption of policies will facilitate continuity, identification and dissemination of best practices within the community and develop a community commitment and trust in meeting the needs of the publicly conserved.
Proposal Two: Develop mechanisms for open exchange of information about conservatee between PG and health care team.
- Develop means of documenting and transmitting between PG and health care team information on patient preferences, family information, health care background, prior decisions made, and current concerns. Also, current medical condition, prognosis, future needs and eventualities.
- As soon as possible after conservatee is stabilized, develop short and long range plans for conservatee based upon baseline functional status, chronic illness burden, and future medical needs. Planning for foreseeable decline or acute exacerbations from underlying disease states should be addressed. Contingency planning should be updated at least annually. A values history can be useful early in conservatorship.
- Establish processes for easy identification and access of key personnel-conservatee, primary physician, and hospital contacts.
Proposal Three: Decision making process should be open, patient's perspective should be considered; outside input should be sought when necessary.
- Patient involvement in decision-making should be supported and maximized to the extent possible.
- Documentation practices should record, not substitute for, dialogue between PG and health care team.
- Have available and utilize a trained group or committee
to debate general principles to be used in decision-making
and as a resource for particular cases. This may be a county
ethics committee, a hospital based ethics committee, or
other structure. This committee should be trained, have
established procedures, and be multidisciplinary in its
membership, including lay members from the community. Direct
involvement of both the PG and the health care team should
Area Two-Facilitate and streamline administrative processes
A clear delineation of processes, review of minimal required documentation, simplification of forms, and exploration of alternatives to court hearings could decrease duplication of effort, increase collaboration, and expedite decision making. Input from court, PG, and health care institutions should be involved to make sure documentation and processes meet the needs of all parties.
Proposal Four: Examine documentation practices to streamline and eliminate vague, confounding, or ineffectual requirements
- Establish a task force composed of legal representatives, advocacy groups, the PG office, the Court, and health care providers to review and revise documentation requirements.
- Clarify-by consensus or request clarification from Attorney General-whether wording related to irreversible coma or persistent vegetative state is necessary for DNAR request or other request to limit life-sustaining treatment.
Proposal Five: Explore innovative Court procedures to maximize responsiveness and ease of using Court processes.
- Develop checklist with what has to happen on both sides for court procedures to move forward-make processes explicit and transparent.
- Simplify pre-court procedures-employ broader use of "meet and confer" procedures.
- Use stipulations to expedite process and ensure needed safeguards are in place.
- Explore use of pro-temp or commissioner to relieve logjams in court calendars.
We feel that change can best be achieved through local efforts at this time. Given the current economic and political climate in California, creating a state oversight body, seeking legislative relief, or any resource intense program is not feasible. However, investment in a program that involves local stakeholders and provides information and opportunities to develop mutually beneficial policies could effect real change. This type of program could be easily accomplished within two full day workshops and a series of quarterly evening meetings. The Court, the PG, and health care providers have an obligation to work together to better meet the needs of the publicly conserved. An investment in mutual education and development of shared policies can serve that obligation and save future resources. As counties face greater economic hardship, improving practices becomes an imperative for survival. This type of program could improve practices and help counties.
We recommend a pilot study to support implementation of these policy recommendations in at least one county. Analysis of program development, clarification of legal issues, and collaboration models could be disseminated and used to develop similar programs in other counties.
- Access to Hospice Care: Expanding Boundaries, Overcoming Barriers. Hastings Center Report Special Supplement, 33(2), pp. S1-S60, 2003National Long-Term Care Ombudsman Resource Center--Long-Term Care Ombudsman Program: Ombudsmen Talk about Guardianship February 2004. Provided by Joe Rodriquez, California Ombudsman.
- American Medical Director's Association-White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care March 2003 http://www.amda.com/library/whitepapers/surrogate/
- Hastings Center. Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. New York, 1987 http://www.thehastingscenter.org
- Institute Of Medicine-Approaching Death: Improving Care at the End of Life. 1997. http://www.iom.edu/report.asp?id=12687
- Motefiore Medical Center-Guidelines for End-of-Life Care in Nursing Facilities: Principles and Recommendations. Mathy D. Mezey et al. March 2000 http://www.hartfordign.org/resources/policy/guidelines_end_of_life.html
- Presidents Council on Bioethics--Aging and End-of-Life Care, April, June, August, October, December 2004 http://www.bioethics.gov