Maryland Disability Law Center Opposes HB 30

"end of life", advance directives, advocacy, cfilc, dredf, MDLC, Our News & Commentary Blog, policy

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.”

Who could possibly have problems with that?

A little more about the act from the introductory text:

FOR the purpose of requiring certain health care providers to provide certain information and counseling about terminal condition care options to certain patients with a terminal condition under certain circumstances; requiring certain terminal condition care counseling to include certain information; authorizing terminal condition care counseling to occur over a certain period of time; authorizing certain referrals for terminal condition care counseling under certain circumstances; requiring certain health care providers to make a certain referral and provide a patient with certain information under certain circumstances; defining certain terms; and generally relating to providing terminal condition care counseling to patients with a terminal condition.

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.

Fortunately, not everyone is like me. The Maryland Disability Law Center (MDLC) is working with the Disability Rights Education & Defense Fund (DREDF) and NDY in expressing objections and concerns related to this legislation. DREDF worked with the California Foundation of Independent Living Centers (CFILC) to oppose similar legislation in California. Below is the complete written testimony submitted by MDLC yesterday:

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

Canada: MPP Gelinas Hopeful Help is on the Way for Minna Mettinen-Kekalainen (Sudbury Star)

advocacy, als, aspergers, Canada, neglect, Our News & Commentary Blog, palliative care

The latest on Minna Mettinen-Kekalainen:

MPP hopeful help is on way

From the story:

For the last three weeks, Mettinen-Kekalainen has taken her fight with the CCAC public in media interviews — even going as far as staging a brief hunger strike to protest the fact she has not been receiving home care.

The CCAC has been unable to say much about the case because of privacy and confidentiality laws, but Mettinen- Kekalainen has been vocal about being asked to sign an agreement with the agency not to threaten or harass home-care workers who visit her.

Mettinen-Kekalainen has said the CCAC interpreted her threat to report nurses for not following her doctor’s orders to the Ontario College of Nurses as harassing and abusive behaviour.

When the woman refused to sign the agreement, services were withdrawn, she said, although the CCAC has said it does not deny services to anyone who needs them.

Gelinas became involved in Mettinen-Kekalainen’s case after Sudbury Star stories about how the woman was living alone, being fed through a gastric tube inserted in her stomach and not being bathed regularly or having her adult diapers changed.

Mettinen-Kekalainen has been termed a palliative patient by her family physician and she is confined to a wheelchair and hospital bed in her home — often on life-supporting oxygen.

The article notes that Gelinas is feeling optimistic after getting more involved:

Gelinas, the NDP’s health critic, was heartened this week after speaking on the phone with North East CCAC executive director Richard Joly about Mettinen- Kekalainen’s case.

While files such as this are confidential, Mettinen- Kekalainen authorized the MPP to have access to personal information to help resolve the dispute.

Gelinas said Tuesday she got involved in the woman’s case, although she is not a constituent of her riding, because she didn’t want her to go without care any longer.

The rookie MPP acknowledged that Sudbury MPP Rick Bartolucci had done “good work advocating for Minna,” but she said her years of working in the health-care industry gave her an advantage in dealing with Mettinen- Kekalainen’s case.

“I’m very optimistic we will have been successful.”

The article also includes some interesting discussions of the criticisms Gelinas has leveled against the bidding system and bureaucracy in home care services – and the less than gracious reactions to her criticisms by others in government.

Finally, I want to provide clarification about something in a previous post. I referred to MP Judy Wasylycia-Leis as a “self-described NDP Health Critic.”

In a comment to the post, I received the following clarification:

To clarify, Ms. Wasylycia-Leis is the MP appointed by her party, the NDP, to act as their official voice in criticising the health policies put forward by the Canadian government, which is currently controlled by the Conservative party.

Ms. Wasylycia-Leis and the official health critics chosen by the Liberal party and the Bloc Québecois are the opposition counterparts to the Minister of Health, who is a Conservative MP.

The person who left the comment also said that my original phrasing – with the use of “self-described” – sounded snide. Reading it again, I can see how it would be interpreted that way. It was not my intention. Rather, it was a combination of typing too hastily and my large amount of ignorance regarding Canadian government. I am sorry for any impression I gave of trying to discredit or disrespect Ms. Wasylycia-Leis. –Stephen Drake

Mike Ervin: Ruben Navarro and Rethinking Donation of My Organs

crime and punishment, mike ervin, NSCIA, organ donation, Our News & Commentary Blog, Ruben Navarro

Most of the time when I find something online that’s relevant to the NDY blog, I pull out an excerpt and point people back to the original article. First, because it’s written by Mike Ervin, who has written pieces featured in our humor section. This piece isn’t exactly humor, but it’s something that fits with some concerns I and others have had for quite awhile – those of us who have significant doubts about what we should do about that “organ donor” section on our driver’s licenses or ID cards.

And because the site that published this essay is operated by the National Spinal Cord Injury Association (NSCIA), I thought I might have a shot at getting permission to publish the piece in its entirety. In this, I was right. The permission was granted almost immediately, by NSCIA executive director K. Erik Larson. This isn’t surprising. NSCIA is an organization that has long combined “traditional” advocacy with support for- and allying with – disability rights activists (like NDY and ADAPT) on cutting-edge issues affecting the disability community.

So, without further delay, here is the latest from our friends Mike Ervin and NSCIA:

Our Top Story: Doctor Acquitted of Hastening Man’s Death to Obtain Organs

By Mike Ervin

It was one of those rare moments in life when we are presented with a no-brainer moral decision. I recently had my state ID card renewed. The woman asked me if I wanted it designated on my card that I want to be an organ donor. I said sure. How selfish would I be to take perfectly recyclable organs to my grave?

But now I want to find out how to officially rescind that decision. In fact, I want to find out if on the back of my card I can write in big red letters KEEP YOUR STINKIN’ HANDS OFF MY ORGANS!!!

It’s all because of the recent acquittal by a California jury of Dr. Hootan C. Roozrokh. He was charged with abuse of a dependent adult and could have gone to prison for eight years in connection with the 2006 death of Ruben Navarro. Navarro’s disability was adrenal leukodystrophy (ALD), which was depicted in the movie “Lorenzo’s Oil.” He was a nursing home resident and one day he was rushed to the hospital because he wasn’t breathing. He was put on a respirator but doctors took him off after only a few days.

Navarro‘s mother agreed to donate his organs and Roozrokh came to harvest them. The goal was to take out Navarro’s organs within 30 minutes after his death, when they are considered to be most beneficial. But when the respirator was disconnected, Navarro didn’t die.

So, according to the case, Roozrokh gave Navarro lethal doses of narcotics. But when he still didn’t die after 30 minutes, Roozrokh gave up and never extracted an organ. Navarro lived for another eight hours.

A prosecutor said Roozrokh “tried to accelerate [Navarro’s] death to facilitate the harvesting of his organs.” But a jury didn’t even think the single abuse charge brought against Roozrokh was worthy of any punishment at all.

Navarro’s mother, Rosa, reportedly said, “They mistreated him and they abused him and they took advantage of him and me. He didn’t die with dignity, and I didn’t have the chance to really say goodbye to him. I don’t think its right. These people need to pay for what they did to him.”

But it doesn’t look like anyone but Ruben and his loved ones will pay.

So now I’m wondering. I certainly don’t mind passing my organs on for others to enjoy. But I do want to make absolutely sure I’m absolutely finished using them first. That’s not too much to ask, is it?

But who’s going to watch out for my precious organs if I don’t? I sure wouldn’t count on any jury to do it. Apparently it’s not hard to find 12 people who can be convinced that trying to kill someone with a disability doesn’t even rise to the level of abuse.

Published: 2008-12-22

Republished from the NSCIA website with permission of the National Spinal Cord Injury Association (NSCIA). 1-800-962-9629 www.spinalcord.org

More on Minna Mettinen-Kekalainen

action alert, advocacy, als, aspergers, neglect, Our News & Commentary Blog, palliative care

First, over the weekend, Minna’s denial of in-home support went from a regional story to a national one in Canada. The Canadian Press picked up her story and it is now being disseminated all over Canada. This is a link to the story on Metronews.ca.

Encouragingly, this story focuses on the consequences of Minna’s withdrawal of personal care, and on the determination of MPP France Gelinas, quoted in Friday’s blog entry, to see this through and also to determine how many other people are being affected similarly:

She hopes for a speedy resolution so Mettinen-Kekalainen can live out her life in dignity, but Gelinas said Mettinen-Kekalainen’s plight is symptomatic of a broken system.

Former Progressive Conservative premier Mike Harris brought in competitive bidding for home care in the 1990s in an effort to reduce the cost for taxpayers, Gelinas said.

Before, the Victorian Order of Nurses and other charitable organizations had government funding and provided excellent home care, Gelinas said. Now, the for-profit companies Gelinas is aware of pay low wages, no benefits and no pension plans, which does not attract top quality nurses, she said.

“Our home care system is broken,” Gelinas said. “And why is it broken? Because of the bidding system. This is not the way to provide care.”

I received email this morning from Minna and it looks like she’s reaching out to a disability rights lawyer who expressed interest in getting involved in some way.

And, oddly, I received email from Judy Wasylycia-Leis, and MP and self-described “NDP Health Critic.” Odd, because she thanks me for contacting her when I cannot for the life of me figure out when or how I did so.

No matter. What’s really important is the part of her email where she says that she has alerted others in government. Specifically, she writes that she has contacted Glenn Thibeualt, who she informs me, is Tudbury’s MP.

At the risk of sounding uncharacteristacally optimistic, things are looking up and Minna (and maybe others) can get the support she needs and is currently doing without.

Please refer to past posts on ways to keep up vigilance and pressure. –Stephen Drake

Canada: Updates on Minna Mettinen- Kekalainen

action alert, advocacy, als, aspergers, Canada, neglect, Our News & Commentary Blog, palliative care

Several new developments since yesterday – or some new aspects to ones already in the works.

First, as I’m writing this, students are staging a protest in Sudbury to raise awareness and keep the pressure up in regard to Minna Mettinen- Kekalainen and the total lack of care and support she is living with as she struggles with advanced ALS.

From yesterday’s Sudbury Star, is the story “Community to protest patient’s plight”:

Laurentian University social work students will stage a day-long protest Friday to keep attention focused on the plight of a Sudbury woman with ALS who says she is being denied home-care services she desperately needs.

The students will demonstrate in front of Sudbury MPP Rick Bartolucci’s office from 8 a. m. to noon, then march to the North East Community Care Access Centre in the Rainbow Centre for a demonstration until 4 p. m. to raise awareness about the case of Minna Mettinen- Kekalainen.

Bartolucci, mentioned in the article above, has responded in a way that has been less than satisfactory. Fortunately, another MPP (MPP = Member of Provincial Parliament) has decided that someone needs to step up to the plate:

New Democrat Health critic France Gelinas is determined to get to the bottom of a dispute between the North East Community Care Access Centre and a woman who says she is being denied home care.

Minna Mettinen-Kekalainen, 42, who has ALS, says the centre is refusing to provide her nursing and personal support care after she threatened to report nurses hired by a contract agency of the centre for failing to follow her doctor’s orders.

Why did it take her this long to get involved? Simple. Minna is actually represented by a different MPP – that would be Mr. Bartolucci, mentioned above.

Gelinas, the Nickel Belt MPP, says she can’t stand by and watch Mettinen-Kekalainen struggle on her own. She said she was reluctant to get involved at first because the woman lives in the Sudbury riding represented by Liberal MPP Rick Bartolucci.

The rookie MPP said she tread carefully when Mettinen- Kekalainen’s story first appeared in The Star two weeks ago, but Thursday she said she has waited long enough for a resolution.

For an example of unimpressive representation, here are some quotes from Mr. Bartolucci’s office:

When contacted in Toronto on Thursday, an aide to Bartolucci, who is also Community Safety and Correctional Services minister, said Bartolucci was not available for comment.

Laura Blondeau said while Bartolucci “cannot publicly discuss details of the case, Mr. Bartolucci is very confident that his constituency office staff has bent over backwards to help this individual. He has closely monitored the situation and is certain that everything that can be done by his office, is being done.

“This is consistent with the approach Mr. Bartolucci and his dedicated constituency staff demonstrate on a daily basis,” said Blondeau in a written statement. (emphasis added)

Was the irony in this official statement intentional, or is it just me?

More here from MPP Gelinas:

Gelinas said she does not blame the centre for denying care to the Sudbury woman, but is angry at the private nursing agency that is refusing to provide care.

Private agencies “have refused care to a whole bunch of people and now they feel entitled to do that,” said Gelinas, a harsh critic of for-profit nursing agencies being hired by community care access centres across the province.

“How can they do this? It feels like if a client is difficult, and if there is no money in it, they say, ‘The heck with her.’

“If a woman as outspoken as Mettinen-Kekalainen is being denied home care, “how many frail seniors are being denied care?” asked Gelinas.

To me, this is the most promising development to date. Gelinas is not only advocating for Minna, but treating her as the visible tip of a large iceberg – a large group of neglected people who aren’t prone to raise a fuss and just suffer in silence.

I’d also like to recommend this op-ed by Carol Mulligan, the reporter who has been writing the articles about Minna’s situation and her struggles. Here’s a sample:

ALS is eating away at Minna Mettinen-Kekalainen’s body, but it would not surprise me if she died of a broken heart. As I lace up my boots and leave her home, I cannot imagine leaving a sick dog alone in conditions like those in which I am leaving Minna.

If she were an animal, I could call animal welfare authorities to rescue her. It’s not that easy to find help for a desperately ill woman.

While I always get a little queasy when animal metaphors are used in relation to humans – especially old, ill and disabled humans – this is a refreshing change from the “we’d put a dog down if she were like this” that I am used to reading.

Not only that, but she’s right. There seems to be an explosion in “no-kill” shelters for abandoned, neglected and abused animals. Be nice to see a similar move in that direction for humans. –Stephen Drake