Yesterday, January 27, the Health & Governmental Operations Committee met in Maryland over the fate of HB 30, one of those innocuous-sounding bills with not-so-innocuous details buried within them. (apologies, but the link to the bill is to a pdf file) In this case, the bill is titled “AN ACT concerning Health – Terminal Condition – Counseling.”
If you’re like me, you might tend to get a little cross-eyed and very restless when trying to burrow through this jargon and figure out what it actually means.
January 26, 2009
Honorable Peter A. Hammen, Chairman
Health & Governmental Operations Committee
House Office Building, Rm 241
Annapolis, MD 21401
Re: HB 30
Dear Chairman Hammen and Members of the Committee:
Maryland Disability Law Center (MDLC) wishes to express its concerns about provisions within HB 30, Health-Terminal Condition-Counseling. To the extent that the legislation is intended to provide information on advanced directives, palliative care and hospice care, we have no issue. We are in accord that such information and services should be more widely available. However, we have grave concerns about certain language, definitions and requirements of the bill. As drafted, we believe that persons with disabilities may be pressed to end their lives or have their lives ended in a way not intended by the legislation.
A. Inadequate definitions:
1. Lack of definition for organizations that offer counseling services. HB 30
provides that the care counseling identified in the bill is provided by a hospice provider, health care provider, or “other organization that specializes in end-of-life condition case management and consultation.” There is no oversight, licensing or professional requirement to support the definition of an “organization that specializes in end-of-life condition case management and consultation.” This is extremely problematic as the organization is to counsel people (and their proxies if amendments suggested by the Office of the Attorney General are accepted) about their options, including the right to refuse or withdraw from any life sustaining procedure and to make decisions about treatment. These decisions may have different legal ramifications if all “proxys” are included in the counseling service and the lack of regulation or even definition of the organizations to which medical personnel MUST provide a referral is extremely troubling. (If there are not sufficient hospice services, what organizations will receive referrals? will they be charging fees for their services? will they be qualified to give advice on the rights of a proxy? how are they staffed or trained to provide this critical service? Are they linked to certain religious or philosophical organizations?).
2. Lack of definition of counseling services. HB 30 provides that terminal care counseling may include discussions about outcomes for the patient and about the benefits and burdens of treatment options. As noted above, with no requirement for standards, qualifications or oversight of the organizations providing such services, MDLC is concerned about the ability of such “organizations” to provide accurate information about potential treatments. We are concerned that patients receive information about assistive technology, rehabilitation, and independent living programs that are available to people with disabilities. In addition, MDLC would like to see patients actively encouraged to consult with organizations familiar with assisting patients cope with specific diseases.
B. Reference in law to provide costs of treatment options. HB 30 requires the counseling service to provide referrals to appropriate entities for information on the costs of treatment options for persons facing end of life conditions. Not everyone has equal access to health care. For some, the challenges of payment for support services necessary to live full lives with disabilities are particularly challenging. As obtaining financial support can be a lengthy and complicated process, we are concerned about the focus on this information at a time when a person is being counseled about their end of life options. The bill requires that organizations that specialize in end of life consultation refer the person or their proxy to financial information about the costs of various treatment options. Because people have access to their costs of care at any point in time and because the counseling organizations do not provide this information directly, we would ask that this reference be stricken from the bill. It appears to suggest that people consider a cost benefit analysis to living. Advocates for persons with disabilities are acutely aware that the benefits of life for people with disabilities have been historically undervalued. In our view the reference of the costs of treatment is an issue that is best addressed without the legislation, which only provides a referral back to a health care provider or insurer who already has an obligation to provide this information. The inclusion of this portion of the bill is of strong concern for the subtle and unintended message it may promote. Fears of lost capacity and financial burden compound a scenario wherein people are making difficult decisions. Certainly they may have the financial information upon request without a legislative mandate with its questionable message.
C. Mandatory transfers. HB 30 generally appears to value a person’s ability to make choices about their lives by requiring that certain information be available to them. However, the legislation does not clearly to provide a person the right to remain with their current treatment provider if that provider does not wish to comply with the requirements of HB 30. As drafted, the health care provider who elects not to follow HB 30 “shall” “refer or transfer the patient to another health care provider”. MDLC requests that this language be modified to clarify that a patient is not required to transfer to another provider if they prefer to remain with their existing provider. Continuity of care is especially important for many persons with disabilities, and obtaining care from providers familiar with specific disabilities can be challenging. A person must retain the ability to remain with their provider, regardless of whether the provider chooses to comply with HB 30.
As a final comment, MDLC notes that it has reviewed potential amendments drafted by the Office of the Attorney General (OAG) and does not find the concerns expressed in this letter to be addressed. The amendments seek to expand HB 30. MDLC notes particular concern with two of the proposed amendments.
1. Addition of “end-stage-condition”. The proposed amendment raises great
alarm as applied to persons with disabilities. It simply lacks adequate safeguards. For many persons with disabilities, there is no medical treatment that will reverse their condition. Their disabilities may be progressive or may couple with other illnesses to render them less able or incompetent but those factors alone should not place them at the “end stage” of life. Consider the definition of “end-stage condition”:
“End-stage condition” means an advanced, progressive, irreversible condition caused by injury, disease, or illness:
(1) That has caused severe and permanent deterioration indicated by incompetency and complete physical dependency; and
(2) For which, to a reasonable decree of medical certainty, treatment of the irreversible condition would be medically ineffective.
This definition does NOT require that a person’s death be imminent. There are children, as well as adults, who are not fully competent and who are physically dependant with progressive, illnesses who may be subject to this law by proxy. The definition could include persons with physical disabilities who have dementia or persons with Alzheimer’s or Parkinson’s disease who are not facing imminent death. Given the stereotypes and prejudices that prevail about the poor quality of life for persons with disabilities, we are concerned that people with disabilities or their proxies may find that the required “counseling” is subtly directed towards ending life.
2. Addition of a “proxy”, which means “an individual authorized to make health care decisions for a patient”. Existing law provides certain rights to persons who may be guardians or surrogates or who have authority under a health care power of attorney or an advanced directive. The authority of these persons varies with the circumstances. The proposed amendments, however, state that a “proxy” shall be counseled on their rights to refuse or withdraw life sustaining procedures and to enter a do not resuscitate order. The proxy may also receive information on the costs of treatment options. Without any reference to existing laws, such as the Health Care Decisions Act and the Advance Directives article, it is not clear that those statutory provisions limit the powers of a person deemed to be a “proxy” under this new statute. Cross referencing existing law and clarifying language would be helpful.
In sum, this bill appears to be too broad to effectively accomplish goals that MDLC can endorse. At MDLC we continue to see death certificates that label the cause of death as a person’s disability, such as “Cerebral Palsy” or “Mental Retardation”. These disabilities do not, on their own, cause death and such conditions should not be viewed as terminal. Such references reflect a continued misunderstanding of causes of death for many people with disabilities. In the disability community it is common to share stories where a person with a disability has been told that they have a short time to live, yet the person gets the last laugh by greatly outliving their projected death. The nature of many disabilities and the uncertainty about when a person may be facing death present complicated issues. Compounding this situation is the fact that discrimination or lack of value for persons with disabilities is a significant unresolved social problem in our country. The history of health care for persons with disabilities is replete with examples of horrific treatment based on medical misapprehensions and assumptions about the lack of ability/capacity of persons with disabilities. For the reasons stated, MDLC opposes HB 30. MDLC would, however, endorse legislation to support hospice and palliative care and increased education and outreach for these services as well as increased education and opportunity for advanced directives.
MDLC thanks the Committee in advance for its consideration and deliberation of these important issues.
Respectfully submitted,
Lauren Young
Maryland Disability Law Center
