TABLE OF CONTENTS
The Public Guardian (PG) is a mechanism of last resort for protecting the interests of the most vulnerable in society-those who cannot care for themselves and have no friend or family willing to care for them. Medical decision-making is one area of protection required for many publicly conserved individuals. Concern over how well this process meets the needs of these individuals has been noted for many years. Confusion over the different types of conservatorship-probate conservatorship vs. Lanterman-Petris-Short conservatorship for psychiatric illness, as well as the requirements for a dementia conservatorship-and the scope of each abound. This confusion is aggravated by the fact that each of the 58 counties manages and administers the Public Guardian system independently and interprets the requirements of the Probate Code somewhat differently. Attempts to standardize practices across counties are hampered by the lack of state oversight and variations in funding, organization, and administration from county to county. These existing problems have been exacerbated by ambiguities in the 2000 Health Care Decisions Law (HCDL) and disagreement over the reach of the 2001 Wendland decision which established a clear and convincing evidentiary standard before decisions to limit potentially life-sustaining treatment in non-terminally ill, conserved patients can be made.
In 2004, the Markkula Center for Applied Ethics received funding from a generous anonymous donor to examine health care decision making for the publicly conserved and to develop policy recommendations. This work built on previous work undertaken by many regional groups as well as the California Medical Association's Council on Ethical Affairs, the California Coalition for Compassionate Care's Professional Practice Committee, and a California Senate Subcommittee on Long Term Care and Aging task force. A literature search was conducted on the legal and medical issues regarding decision-making for decisionally incapacitated individuals. Interviews were conducted with key stakeholders, including Public Guardians, physicians, key hospital personnel, statewide industry and professional groups, key individuals in state agencies, advocacy groups, and experts in law and bioethics.
Areas of Breakdown
We identified four areas of breakdown in the medical decision making process for the publicly conserved:
- Existing advance directives or evidence of individual wishes are not available when needed.
- Extensive documentation is required by the PG office anticipating court review.
- Documentation requires static statements of fact when the situation may be fluid and ambiguous.
- PG documentation requirements are not always relevant to patient's condition or needs.
- Documentation is often required in lieu of real time conversation.
- PG office faces difficulties reviewing patient chart on request.
- Health care decisions are made without consulting conservator; changes in condition are not communicated to PG office.
- PG office unresponsive within time frame required for urgent or emergent treatment needs.
- PG has difficulty reaching physician.
- Physician has difficulty reaching PG.
- Physicians do not anticipate or appreciate time requirements for court intervention.
- PG office processes cumbersome and generally too slow to be able to respond to acute health problems.
Distrust and lack of understanding of roles
- PGs feel physicians refuse to make medical decisions in order to avoid liability.
- Physicians feel PGs refuse to make decisions in patient's interests in order to avoid legal liability.
- Physicians felt PG not sufficiently involved in planning for patient's care and future needs.
- Both sides expressed uncertainty and distrust about other's motivation, claiming to be the only one concerned about the patient.
Misperceptions and disagreement over legal requirements
- Wide variation across counties in what decisions are allowed as well as what decisions require court approval.
- Confusion over determination of medical situation and obligations when individual is near death.
- Confusion whether consent requirements are limited to authorization for treatment only.
- Uncertainty over PGs right to insist on treatment against medical recommendation.
Two meetings were convened in December 2004 to identify areas of consensus on (1) principles to be employed to ensure good decision making on behalf of the publicly conserved; and (2) the means of developing processes to support good decision making for this population by the Public Guardian. This report presents the recommendations from this project.
Ideal processes for publicly conserved individuals
The PG will often have little or no information about the patient's competent expression of wishes for future health care nor does the PG have the type of caring relationship based on trust a family member, friend, or chosen surrogate would have. What's more, reliance on advance directives will never provide sufficient guidance for the PG as they too often lack specificity or applicability to unforeseeable circumstances. Instead, the PG will need to engage with the physician and others in evaluating routine, emergent, and potential health decisions and treatment plans in light of what is known of the individual's values, concomitant health concerns, and current interests. The conservatee's involvement in the decision making process should be supported and maximized to the extent possible, even though the conservatee may lack full decision making capacity. Strict guidelines requiring or prohibiting classes of decisions should be avoided as they preclude individualized decision-making.
Many counties have expressed an interest in developing policies for end-of-life decision-making. However, in the 21st Century, chronic illness has become recognized as a major health threat and medicine is trying to move away from the traditional reactive, crisis-intervention approach toward one of evidence-based practice and disease management. This approach requires proactive anticipation and planning for inevitable contingencies, including the transition to the end of life. A narrow focus on end of life or the transition to the end of life is misguided, especially since identification of the transition to end of life is elusive in most cases. We would argue that all treatment decisions, not just those at the end of life, deserve care and consideration in order to meet the needs of the publicly conserved individual no matter what stage of life she is in.
Decision making for the publicly conserved individual should be a careful process designed to protect the rights, interests, and well being of the particular individual. Health care needs should be anticipated to the extent possible and plans for care developed, avoiding crisis oriented, reactive decision making to the extent possible. A focus on goals and a plan for treatment rather than on discreet decision-making events is required. The everyday experience of the individual should be central to all decisions. The National Guardianship Association has developed Standards of Practice and a Code of Ethics to guide the work of court appointed 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.
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, it was unanimously felt 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 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 a working relationship between most individual conservators and the nursing homes. Second, the most common problems uncovered in our research were in the acute care setting where the threat to life and the decisions required are more urgent. PGs should strive to develop a relationship with the acute care settings within their jurisdiction just as acute care institutions should learn about the PG programs within their area. Cultivating these relationships will facilitate communication, cooperative development of routine practices, and will lead to better care for conservatees. Information regarding changes in the law and changes in community standards of practice will be easily shared.
- Proposal One: Develop a relationship and shared understanding between local health care providers, the Public Guardian, and the Court in each county.
- Proposal Two: Develop mechanisms for open exchange of information about conservatee between PG and health care team.
- Proposal Three: Decision making process should be open; patient's perspective should be considered and outside input should be sought when necessary.
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 providers and institutions should be sought to make sure processes meet the needs of all parties.
- Proposal Four: Examine documentation practices to streamline and eliminate vague, confounding, or ineffectual requirements.
- Proposal Five: Explore innovative court procedures to maximize responsiveness and ease of using court processes.
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.
This project would not have been possible without the generous support of a generous anonymous donor and the Markkula Center for Applied Ethics at Santa Clara University. I am grateful for the support and patience of Margaret McLean and Kirk Hanson of the Markkula Center.
I would also like to thank the many health care providers, public guardians, elder and disability advocates, attorneys, and others who gave of their time to this project. At the end of the second work group one participant said "These were days well spent. I will go back to my department and do things differently."
It is widely acknowledged that there are problems in the conservator systems across the country. These problems will become greater as the projected demographic trends for aging of the population become realized. The increase in incidence of dementia disorders will put more and more people within these systems. While many consider medical decision making to be a relatively minor role of the guardian and not as important as other areas of concern, the guardian's authority to make medical decisions can have profound implications on the individual's daily life as well as the possibilities for continued life or death. Further, while the courts, from the US Supreme Court down to most state Supreme Courts, have repeatedly ruled that they are not the appropriate venue for most medical decisions, the courts appoint guardians for the express function of decision-making for the conserved individual.
Problems in California have been noted for many years. Confusion over the different types of conservatorship-probate conservatorship, the. Lanterman-Petris-Short conservatorship for psychiatric illness, as well as the requirements for a dementia conservatorship-abound. This confusion is exacerbated by the fact that each of the 58 counties interprets the requirements of the Probate Code somewhat differently. Attempts to standardize across counties are hampered by the lack of state oversight and variations in funding, organization, and administration of the conservator programs from county to county. These existing problems have been exacerbated by the 2001 Wendland decision that established a requirement for clear and convincing evidence of the previously competent individual's wishes or clear and convincing evidence that it would be in the individual's best interest before any decision to limit potentially life-sustaining treatment in non-terminally ill patients can be made.
In 2004, the Markkula Center for Applied Ethics received funding from a generous anonymous donor to examine health care decision making for the publicly conserved and to develop policy recommendations. This work built on previous work undertaken by many regional groups, the California Medical Association's Council on Ethical Affairs and the California Coalition for Compassionate Care's Professional Practice Committee. A literature search was conducted on the legal and medical issues regarding decision-making for decisionally incapacitated individuals. Interviews were conducted (see Appendix One) with key stakeholders, including Public Guardians; physicians; key hospital personnel; statewide industry and professional groups; key individuals in state agencies; advocacy groups; and experts in law and bioethics. Two meetings were convened in December 2004 (see Appendices Two and Three) to identify areas of consensus on (1) principles to be employed to ensure good decision making on behalf of the publicly conserved; and (2) the means of developing processes to support patient centered decision making by the Public Guardian (PG). Although the problem of decision making for the incapacitated individual who lacks a surrogate is pressing and poses a significant economic burden (patients can languish in hospitals for 6 to 8 months awaiting a court appointed conservator) we decided that establishing appropriate decision-making processes for those already conserved was an appropriate place to start. We feel that working toward developing sound processes to be used in guiding decision making for the publicly conserved can be used as a foundation for developing guides and processes for those who have no surrogate and are awaiting court intervention or need only temporary support for medical decision making.
Foresight is needed in addressing these issues as the number of individuals without friends or family to make decisions for them will increase dramatically in the coming decades . The number of people age 65+ with Alzheimer's disease (AD) is currently estimated to be about 4.5 million people. As people age, the risk of AD increases; for every 5 year increase in age, the percentage of people with AD doubles. Women not only live longer than men but also are more likely to be affected by AD. It is estimated that by 2050 there will be at least 13.2 million Americans with AD . According to 2002 Census Estimate Data, there were 35.6 million people over age 65 living in the US or 12.3% of the population. Growth in this age group will burgeon in the coming decades; by 2030 there will be about 71.5 million older persons-more than twice their numbers in 2000. The 85+ population will increase from 4.6 million to 9.6 million during this time period . In California, one in every 9 individuals is 65+ years; one in 74 is 85+ years. More than one in every five adults in California is 65+ years or disabled .
The public guardian system will be greatly affected by these numbers. State and county budgets in California are facing critical shortages. The economic strain on these public agencies is already being felt as caseloads become ever greater. Society must consider just, compassionate, and efficient means of caring for its most vulnerable members. It is a community and societal issue that cannot be resolved by individuals and families alone.
It is difficult to get precise numbers on the number of publicly conserved individuals in the state. It is even more difficult to get numbers on how many have had medical decision making authority assigned to the Public Guardian. Most counties do not have precise systems for easy retrieval of aggregate data of this sort. In 2001-2002 there were 15,566 permanent conservatorships of all types in California. Los Angeles County is a special case in that it accounts for 33% (5, 102) of conservatorships of all types. Five counties each account for 5% or more of the total-Alameda (919), Orange (1,790), San Diego (1,283), San Francisco (818), and Santa Clara (1,038). All other counties have fewer than 5% of the total number of conserved in the state, including 37 counties with less than 1% (<175), 8 with fewer than 10 conserved individuals. Five counties have no reported permanent conservatorships.
There are three types of conservatorships in California: probate (general conservatorship), dementia (when there is a diagnosis of dementia and psychotropic drugs and/or a secured perimeter facility is required-notice, legal representation, and special court authorization are required), and Lanterman-Petris-Short [LPS] (conservatorship based on grave disability related to a psychiatric diagnosis). Appointed conservators can be public (through the county), private (a family member or friend), or private using a professional conservator or private agency. Additionally, an individual may have conservatorship granted for the person, the estate, or both. Medical decision-making authority must be specified in the court papers granting conservatorship of the person. LPS conservatorships do not grant blanket decision-making authority; only specific decisions necessary for treatment of the identified psychiatric disorder are covered, general medical decision-making authority is not granted to the conservator and must be addressed by the court if the individual is incapable of making the decision. For the purposes of this project we are focusing our attention only on those individuals who have had a public conservator appointed with medical decision making authority. Even though any medical decisions for a person under LPS conservatorship must go through the courts, the actual decision making process should be similar.
The Health Care Decisions Law (HCDL) sets out procedures for making health care decisions by different types of surrogates (including conservators) acting on behalf of the patient. California law also details the medical decision making responsibilities of a court appointed conservator or guardian . The intent of the HCDL was to clarify and standardize the decision-making processes and standards utilized for making health care decisions. The HCDL specifically sets out the same decision making standard for a court appointed conservator granted health care decision making authority as identified for an agent appointed through an advance health care directive or a surrogate verbally appointed by the patient .
A [conservator] [agent] [surrogate], including a person acting as a [conservator] [agent] [surrogate], shall make a health care decision in accordance with the patient's individual health care instructions, if any, and other wishes to the extent known to the [conservator] [agent] [surrogate]. Otherwise, the [conservator] [agent] [surrogate] shall make the decision in accordance with the [conservator's] [agent's] [surrogate's] determination of the patient's best interest. In determining the patient's best interest, the [conservator] [agent] [surrogate] shall consider the patient's personal values to the extent known to the [conservator] [agent] [surrogate].
The following definitions are provided in the HCDL:
§4615. "Health care" means any care, treatment, service, or procedure to maintain, diagnose, or otherwise affect a patient's physical or mental condition.
§4617. "Health care decision" means a decision made by a patient or the patient's agent, conservator, or surrogate, regarding the patient's health care, including the following:
(a) Selection and discharge of health care providers and institutions.
(b) Approval or disapproval of diagnostic tests, surgical procedures, and programs of medication.
(c) Directions to provide, withhold, or withdraw artificial nutrition and hydration and all other forms of health care, including cardiopulmonary resuscitation.
Probate Code §3200-3212 sets out the mechanisms for petitioning the court to determine decision-making capacity, to appoint a surrogate decision-maker, or to make a particular decision when health care decision-making authority has not already been granted.
There are two areas in the HCDL where the standards set for conservatees differ from those for other individuals. The first is that the conservator has the authority to compel treatment over the conservatee's objections. An agent or surrogate has no such prerogative. This is the source of some tension in the clinical setting as health care providers are generally uncomfortable doing something to an individual if that individual is actively protesting against it. In no other situation would treatment be compelled except in extreme emergencies. This authority is sometimes interpreted as the conservator's right to determine the medical treatment the individual should receive, even in situations where the physician does not recommend the treatment.
The other area of divergence is around the liability protection extended to the third party decision maker. Specific protections from criminal or civil charges are provided for an agent or surrogate acting in good faith. Conservators are offered no such protection. Counties and public guardians are concerned about their level of risk in making health care decisions, even though no actual cases of liability have been identified.
The HCDL went into effect in July 2000. In August 2001, the Wendland decision from the California Supreme Court seemed to contravene some portions of the HCDL. In their ruling, which was upheld on appeal, the court determined that in situations involving a conscious conservatee who had not left instructions about care or identified an agent or surrogate for health care decisions, and "whose conservators propose to withhold life-sustaining treatment for the purpose of causing their conservatee's death" clear and convincing evidence of the conservatee's prior wishes or best interest is necessary before proceeding. This standard is not required for other surrogates making decisions in similar situations and goes beyond the HCDL requirements. It is difficult to gauge the effect of Wendland based upon the interviews we have conducted and there have been no judicial tests of the decision to date. Many of the PGs and elder law attorneys we interviewed said that Wendland has made no difference and an equal number said that Wendland has changed everything. There is general agreement that private conservators generally ignore the requirements of Wendland. One attempt at proposing clean-up legislation in 2002, sponsored by the Senate Subcommittee on Long Term Care and aging and the California Coalition for Compassionate Care, failed because parties could not agree on a basic interpretation of the requirements of the ruling. Some felt that Wendland only addressed artificial nutrition and hydration in non-terminal, conscious patients; others felt that it addressed all life sustaining measures for any conserved individual who is not comatose or in a persistent vegetative state.
There are many national and state efforts to improve guardianship programs currently underway-The Wingspan Implementation program is one example. However, none have given more than passing mention to medical decision-making. Yet, all individuals who lack the capacity to make decisions for themselves will have some level of chronic illness; many of the elderly especially will have multiple chronic illnesses. For that reason, medical decision-making is an important and ongoing component of the PG's efforts to make sure that the conservatee's needs and comfort are provided for.
The extreme variation in practices noted across counties seems to exceed what the ambiguities in the law might suggest. For example, in some counties the provisions of Probate §3200 are routinely used without difficulty. In others, the Probate judge has refused to hear any Probate §3200 petitions. Probate judges may rotate on and off the bench frequently, some in 2-year cycles. This can create challenges for maintaining consistent policies. The fact that 5 counties do not report a single permanently conserved individual within their borders is also of interest. The result is that an individual's rights, and the protection of those rights, are greatly affected by geographic location.
In the summer and fall of 2002, the California Medical Association did an electronic survey of practices in PG offices. 31 of the 58 counties responded to the survey. Note the range of variation in response.
|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.
IDEAL PROCESSES FOR MEDICAL DECISION MAKING
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.
IDEAL PROCESSES FOR PUBLICLY CONSERVED INDIVIDUALS
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 are needed.
- Court supports PG to make medical decisions with minimal judicial review.
- 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 be mandatory.
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
Theresa Drought is a professor of nursing at University of Virginia. Formerly, she was co-director of the Regional Ethics Program, Kaiser Permanente Northern California.