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Legal Issues on Providing Hospice Care
04-16-2008, 11:33 AM
Post: #1
Legal Issues on Providing Hospice Care
We are delighted to announce that Kirk Lewis, General Counsel at Schenectady ARC, is our guest expert moderating this two week session on Legal Issues on Providing Hospice Care for Individuals with Intellectual and Developmental Disabilities. Below is Kirk's bio and a case study to guide our discussions.

Biography:
Kirk M. Lewis, Esq. has been General Counsel for Schenectady ARC since 1999, advising the agency and the Board on all legal matters, including issues of guardianship, end of life care and decision making, and regulatory compliance. Prior to joining Schenectady ARC, he was a partner with DeGraff, Foy, Holt-Harris & Kunz in Albany, where he was engaged in the general practice of law, with an emphasis on civil litigation. Kirk worked for Schenectady ARC’s Residential Department before he went to law school, and his younger brother is a consumer of Schenectady ARC’s services.

Case Study:
Although Hospice care is widely accepted as a humane way to help people face terminal illnesses, the decisions that must be made to accept hospice care can become complicated when the individual facing the end of life illness has an intellectual or other developmental disability. Consider the following scenario (which is completely fictional):

Bob S. is a 64 year-old man with Down syndrome who has lived in an ARC operated, state certified residence since leaving a state-run institution more than 30 years ago. Bob has no known family, but has prospered and done well living in the ARC house. He also attended an ARC day hab program up until the beginning of this year, when health problems prevented his daily attendance.

For the last several years, staff have documented a steady and increasingly rapid decline in Bob’s cognitive abilities. Bob has been diagnosed as having early onset Alzheimer’s disease. Prior to this diagnosis, Bob was limited in his abilities--he was not able to read or write, and he had limited expressive language. Prior to the onset of Alzheimer’s he was able to perform most basic activities of daily living with verbal prompts. Recently, however, he has required hands-on assistance for all activities. Most recently, he has had extreme difficulty swallowing liquids and processed foods. Even with a primarily liquid diet, Bob has lost a significant amount of weight in the last 3 months and has been hospitalized twice, once with aspiration pneumonia and once to provide IV fluids to prevent possible dehydration. Although he seemed to “rally” briefly after each hospitalization, he continues to decline in almost every way.

In addition to the diagnosis of Alzheimer’s, at his most recent physical exam his primary care physician detected a large mass in his abdomen. An MRI indicates a mass that might be a cancerous tumor in his large intestine. The mass cannot be definitively diagnosed, however, without a biopsy. It appears that the mass could be surgically removed, but all treatment options cannot be assessed without surgery to remove the mass and to assess the surrounding tissues.

The treatment team for Bob has been convened to discuss treatment options. His primary care physician is recommending hospice care. Based on his knowledge of Bob’s history and the prior exams and test results, he believes that the mass is a rapidly progressing form of colon cancer, and that Bob will not live more than six months. In addition, due to the progression of Bob’s dementia, he is not sure that Bob would survive surgery; even if he did survive, the treatment options that would probably be required after surgery (radiation and/or chemotherapy) would, in his opinion, be very difficult to undergo and would, in all likelihood, destroy any quality of life for Bob in his remaining months.

Other members of the treatment team are not sure. A nurse has pointed out that if the mass is not treated surgically, Bob’s death is all but certain. On the other hand, if the mass is removed, Bob may rally, as he has in the past, and may live for a longer period of time notwithstanding the dementia.

Here are some questions to consider for discussion.

1. Can the treatment team make this decision? If they cannot make the decision, who can? What standard should be used to make the decision?

2. Is the decision about whether to have the biopsy/surgery a decision to withhold or withdraw life-sustaining treatment? Would it be different if it was clear that the surgical procedure would treat a life-threatening ailment?

3. Would the answers to any of the foregoing questions be different if Bob had a family member available? Or a legal guardian?


To join the discussion, you may hit either quote (preferred), or reply.

If you are not yet registered please do so by clicking the Register button at the top of the page so you can join in the discussions.

Anna Zendell, MSW
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04-30-2008, 05:57 PM
Post: #2
Re: Legal Issues of Providing Hospice Care -- 4/28/08 - 5/9/
Anna Wrote:We are delighted to announce that Kirk Lewis, General Counsel at Schenectady ARC, is our guest expert moderating this two week session on Legal Issues on Providing Hospice Care for Individuals with Intellectual and Developmental Disabilities. Below is Kirk's bio and a case study to guide our discussions.

Biography:
Kirk M. Lewis, Esq. has been General Counsel for Schenectady ARC since 1999, advising the agency and the Board on all legal matters, including issues of guardianship, end of life care and decision making, and regulatory compliance. Prior to joining Schenectady ARC, he was a partner with DeGraff, Foy, Holt-Harris & Kunz in Albany, where he was engaged in the general practice of law, with an emphasis on civil litigation. Kirk worked for Schenectady ARC’s Residential Department before he went to law school, and his younger brother is a consumer of Schenectady ARC’s services.

Case Study:
Although Hospice care is widely accepted as a humane way to help people face terminal illnesses, the decisions that must be made to accept hospice care can become complicated when the individual facing the end of life illness has an intellectual or other developmental disability. Consider the following scenario (which is completely fictional):

Bob S. is a 64 year-old man with Down syndrome who has lived in an ARC operated, state certified residence since leaving a state-run institution more than 30 years ago. Bob has no known family, but has prospered and done well living in the ARC house. He also attended an ARC day hab program up until the beginning of this year, when health problems prevented his daily attendance.

For the last several years, staff have documented a steady and increasingly rapid decline in Bob’s cognitive abilities. Bob has been diagnosed as having early onset Alzheimer’s disease. Prior to this diagnosis, Bob was limited in his abilities--he was not able to read or write, and he had limited expressive language. Prior to the onset of Alzheimer’s he was able to perform most basic activities of daily living with verbal prompts. Recently, however, he has required hands-on assistance for all activities. Most recently, he has had extreme difficulty swallowing liquids and processed foods. Even with a primarily liquid diet, Bob has lost a significant amount of weight in the last 3 months and has been hospitalized twice, once with aspiration pneumonia and once to provide IV fluids to prevent possible dehydration. Although he seemed to “rally” briefly after each hospitalization, he continues to decline in almost every way.

In addition to the diagnosis of Alzheimer’s, at his most recent physical exam his primary care physician detected a large mass in his abdomen. An MRI indicates a mass that might be a cancerous tumor in his large intestine. The mass cannot be definitively diagnosed, however, without a biopsy. It appears that the mass could be surgically removed, but all treatment options cannot be assessed without surgery to remove the mass and to assess the surrounding tissues.

The treatment team for Bob has been convened to discuss treatment options. His primary care physician is recommending hospice care. Based on his knowledge of Bob’s history and the prior exams and test results, he believes that the mass is a rapidly progressing form of colon cancer, and that Bob will not live more than six months. In addition, due to the progression of Bob’s dementia, he is not sure that Bob would survive surgery; even if he did survive, the treatment options that would probably be required after surgery (radiation and/or chemotherapy) would, in his opinion, be very difficult to undergo and would, in all likelihood, destroy any quality of life for Bob in his remaining months.

Other members of the treatment team are not sure. A nurse has pointed out that if the mass is not treated surgically, Bob’s death is all but certain. On the other hand, if the mass is removed, Bob may rally, as he has in the past, and may live for a longer period of time notwithstanding the dementia.

Here are some questions to consider for discussion.

1. Can the treatment team make this decision? If they cannot make the decision, who can? What standard should be used to make the decision?

2. Is the decision about whether to have the biopsy/surgery a decision to withhold or withdraw life-sustaining treatment? Would it be different if it was clear that the surgical procedure would treat a life-threatening ailment?

3. Would the answers to any of the foregoing questions be different if Bob had a family member available? Or a legal guardian?


To join the discussion, you may hit either quote (preferred), or reply.

If you are not yet registered please do so by clicking the Register button at the top of the page so you can join in the discussions.
Quote:

1. The treatment team depending on what state you are in can or cannot make this decision. I have been involved in a very similiar case where patient had developed a esophageal cancer, she was deaf, mute and blind now 48 and had been institutionalized, no family. Now living in a group home. The group home in concert with the hospice made the decision not to do anything but comfort care. In this case if the state does not allow for the physicians and team do act in the patient's best interest then the guardian would have to make the decision. the standard to make the decision should be that it is made by a team that includes palliative care consultant, ethicist, surgeon, administrator, primary physician, oncologist, neurologist, and the primary team that takes care of the patient. They are really the "family" for the patient.

2.In this case I would think the prudent thing would be to find out what the biopsy shows. If it is an aggressive cancer then all bases would be covered. One does not want to assume something when you have patient who can't not speak for themselves. They should have the benefit of the doubt. I don't think that it would make a difference if the surgery would be treating a life threatening aliment. The patient sounds sick enough that he could die from the surgery alone. If the biopsy should a lymphoma that could possibly be radiated, then we may have some life prolonging issues. It is hard to separate out whether the patiet's weight loss is due to the tumor or advancing Alzheimer's.

3. No I don't think so. I think I would still propose the same things.
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05-02-2008, 11:49 AM
Post: #3
Response to Lcorreoso
Lcorreoso makes an excellent point that it depends on what state you are in as to who has the authority to make certain decisions. Within certain constitutional limits, the Supreme Court has left it to the states to determine who can decide, and how a decision can be made, about issues pertaining to treatment at the end of life, particularly if decisions have to be made about withdrawing or withholding life sustaining treatment.

The basic premise that the courts start with is that a competent individual has the right to decide whether or not he or she wants any particular medical treatment. Controversies arise when a medical decision has to be made and the individual is not competent to consent to the decision. The first question is who can decide, if the individual is not capable? The second question is, what should the decision be?

There are several famous court cases that illustrate these principals. The early case that many people are familiar with was the case of Karen Quinlan, from New Jersey, who was injured, comatose and believed to be in a permanent state of total disability. The more recent case that attracted national attention was the case of Terry Schiavo. Both of these cases involved the question of withdrawing life sustaining treatment--articial nutrition and hydration--which action would inevitably lead to death.

In the Schiavo case, there were extensive legal battles over who should make the decision. The courts that addressed the question uniformly found, however, that Terry Schiavo's husband was the proper person. The courts also agreed that he had presented sufficient evidence that it was Terry's wish that she would not be kept alive under the circumstances--in other words, he was simply implementing what her wishes would be if she could express them.

The questions of who can make the decision, and what that decision should be, are often raised by the decision to go to hospice. In the case of Bob S, for example, if the decision to do nothing about the mass will inevitably lead to death, arguably the decision to enter hospice is the withholding of life sustaining treatment. Under New York law, there is a limited group of surrogates, under limited conditions, who are authorized to make that decision. In the absence of those conditions, New York Law presumes that an individual would want every effort made to sustain his or her life.

None of this is easy, however--if the decision of the treatment team is that exploratory surgery, a biopsy and possible surgical and/or other interventions are the best course of action, do they have the ability to consent to invasive surgery?

I can address, in another post, some of the circumstances where a surrogate is authorized, under NY law, to consent to the withholding or withdrawing of life sustaining treatment. Even if it is authorized, however, the question still remains, how do you decide that that is the right thing to do? How did the court in Schiavo resolve that question? Is it different for many of the people that we serve?
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05-03-2008, 10:06 AM
Post: #4
Another Question
My name is Rita Buckley. I was wondering if it would have been possible to have Bob assign a health care proxy for himself? Is that something that is done with consumers? How is it done when someone does not have any family living?

M. Rita Buckley RN MS
Palliative Care Nurse
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05-05-2008, 12:50 PM
Post: #5
Re: Another Question
ritabuckley Wrote:My name is Rita Buckley. I was wondering if it would have been possible to have Bob assign a health care proxy for himself? Is that something that is done with consumers? How is it done when someone does not have any family living?
Hi Rita--you raise an excellent question. Health Care Proxies can be used by our consumers, provided that the individual has the ability to understand what it is they are doing by signing the health care proxy. To back up a bit, a health care proxy is a written instrument where one person (the principal, to use legal terms) delegates health care decision making authority to another person (the proxy). Health care proxies are authorized under New York Law, and there is a Dep't of Health approved form (along with very easy to read directions) on DOH's website that anyone can print and use. That website can be found at http://www.health.state.ny.us/profession.../intro.htm

For persons living in settings certified by OMRDD, there are regulations that address by whom and how a health care proxy should be executed. At the start, I stated that health care proxies can be used, provided the individual has the ability to understand what he or she is doing when he or she signs the proxy. That is another way of saying that the individual must have the capacity to execute a proxy--capacity means he or she understands the action, understands the alternatives to the action, and can make a choice to do the action free from duress or coercion.

In the case of a health care proxy, the action is giving someone else health care decision making power when the principal is unable to exercise it him or herself. The consumer does not need to understand all the decisions that a health care agent might make--he or she just needs to understand that by signing the document, they are authorizing the other person to make decisions for them.

Both the Public Health Law and the OMRDD regs that apply to our consumers state that the law presumes everyone is competent to execute a health care proxy, unless a guardian or committee has been appointed, or a court has found the person to lack capacity. OMRDD regs go a bit further, however, and restate the capacity that an individual should have to execute a health care proxy--the regulations state that "a person who is presumed competent may lack the capacity to write a health care proxy if that person cannot understand that he or she is delegating to another the authority to make health care decisions."

The regulations contain other requirements that affect who can witness a health care proxy, and who can be the agenty, that are not applicable to the general public, which I will not bore people with here!

So, the short answer to your question is yes, if the person can understand that he or she is delegating decision making authority, he or she can sign a proxy.

For the hospice/end of life setting, however, there are further complications--New York's health care proxy law states that the proxy (the agent) does not have the authority to make decisions about the withdrawal or withholding of nutrition or hydration unless the principal has given the proxy that authority. In other words, the principal has made his or her wishes known to the agent as to how he or she would want to be treated at the end of life. Many of our consumers, even if they have the capacity to delegate health care decision making authority, will not have the capacity to make an informed choice about end of life treatment so that they can tell their agent their wishes and give the agent to authority to make those decisions. In these circumstances, the scope of the authority of the health care proxy can get somewhat murky.

In short, health care proxies can be very useful, but they raise a whole new set of issues!
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05-19-2008, 05:05 PM
Post: #6
Legal Issues Forum Open for Q & A through end of May
Hello, Kirk Lewis has offered to remain on board with us for a couple of extra weeks to answer any questions you may have regarding legal issues concerning legal issues around end-of-life care!

If you wish to post a question, concern, or some aspect of a situation you may be struggling with, please feel free to do so!

You may hit reply to this message or the quote button as well to start the ball rolling:-)

Regards,
Anna

Anna Zendell, MSW
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