>> Hello and welcome to this training which will introduce you to the Massachusetts Department
of Developmental Services' new policy regarding life-sustaining treatment.
This training was prepared by the Center for Developmental Disabilities Evaluation and
Research on behalf of DDS.
My name is Jackie Berman and I'm an attorney with DDS.
I'm here to introduce the policy.
At the end of a person's life, there are many decisions to be made about treatment, decisions
designed to preserve dignity, comfort, and quality of life.
The position of DDS is that all individuals have the same rights regarding end-of-life
decision-making including those with intellectual disabilities even if they are under guardianship.
Those who are not capable of making decisions about life-sustaining treatment have access
to options to help them make those decisions.
So what's new in this policy?
While the policy statement is similar to the previous policy, it goes a bit further to
include individuals under guardianship and with health care proxies.
Here's a brief summary of what you can expect.
Some sections have been clarified such as when it's appropriate to consider a Do Not
Resuscitate Order, when to use an Ethics Committee, and when court intervention is required.
The section on guardianship has been expanded and there's a separate training on guardianship.
>> Let's take a closer look at some of the principles found in the Massachusetts Department
of Developmental Services policy on life-sustaining treatment.
Informed choice, goals of care, dignity and comfort, use of hospice, use of Ethics Committees,
long-term life support technology, withholding or withdrawing nutrition and hydration, Do
Not Resuscitate orders, and medical orders for life-sustaining treatment or MOLST.
Decisions about life-sustaining treatment must be made with informed consent.
That means that the person making the decision has the legal authority to do so, that they
have all the relevant information about treatment including risks and benefits, and that the
decision is made freely without coercion.
For someone without a guardian, who is competent, it's advisable to suggest the appointment
of a healthcare agent through a health care proxy.
For someone without a guardian and whose ability to make informed decisions is questioned,
a clinical team assessment should be considered.
Note that under Massachusetts' law, even a court appointed guardian does not have the
legal authority to make a decision regarding all life-sustaining treatments.
This may require expanded authority from the probate court.
In such a case, the DDS attorney, along with a guardian, will petition the court to expand
the authority of the guardian.
This process of court expanding authority of a guardian to consent to highly invasive
medical treatment is called Substituted Judgment.
When, in the opinion of the medical providers, the burdens of attempting to cure or prolong
life outweigh the benefits for the individual, then treatment can shift to comfort care.
Comfort care may include both palliative care and hospice.
Palliative care focuses on patient comfort rather than recovery.
When getting better is no longer an option, hospice care emphasizes comfort measures and
end-of-life counseling to provide emotional, social, and spiritual support to the person
who is dying, as well as to their family and caregivers.
To preserve the dignity and comfort of the individual, pain relief and comfort measures
will be provided, even if treatment for the underlying illness has stopped.
If death from a terminal condition is expected within six months, then the person is eligible
for hospice services.
Hospice services can be provided at home, in a long-term care facility, and even a day
program.
Hospice is a treatment option if no other treatment is viable.
While anyone can request hospice, a physician must order it.
When there's a disagreement about the decision to accept or refuse life-sustaining treatment
or whether or not implement a DNR Order, it may be useful to consult with an Ethics Committee
to insure that the person's human rights and dignity have been fully considered.
An Ethics Committee may include clinicians whose expertise is relevant to the person's
condition and an ethicist.
However, where court approval of a decision is required, the ultimate decision making
responsibility cannot be shifted away from the court to a committee or panel.
A decision as to whether or not a Substituted Judgment is required must be made in consultation
with the DDS Regional Attorney.
When there's some reasonable expectation of a cure or remission of an illness, then life
support measures should be taken.
Stopping life support would be considered if the burdens outweigh the benefits.
It's generally expected that artificial nutrition and hydration such as through intravenous
fluid or a feeding tube would be given.
Any decision to withhold or withdraw nutrition or hydration is reviewed on a case by case
basis.
A legally competent person, in collaboration with his or her qualified healthcare provider,
can consent to a DNR order.
If the person is incapable of giving consent, then the consent to a DNR order may be given
by a properly activated health care agent or by an involved family member whether or not
they are the legal guardian.
Consultation with the DDS Regional Attorney is required to determine the legal authority
of the guardian or health care agent.
In order for a DNR order to be considered, one or more of the following conditions must exist:
Life threatening illness or injury, chronic progressive disease, dementia, serious
chronic health condition that requires or will require advanced medical intervention,
any advanced debilitating disease.
Any end-of-life or DNR order must be reviewed at least once a year at the ISP to determine
the continued appropriateness of the order.
MOLST stands for medical orders for life-sustaining treatment.
The MOLST must be signed by the competent individual and that person's physician, physician
assistant, or nurse practitioner.
If not competent, the person's loving family member, whether guardian or not, may sign
the DNR section only.
In all other cases, the guardian must have expanded authority to sign.
Likewise, the person's designated health care agent may sign if a physician has activated
the health care proxy.
The DDS Regional Attorney should be consulted anytime a guardian signs a MOLST or DNR order
or if there are any questions about a guardian or agent's legal authority to sign on a person's
behalf.
A MOLST differs from an Advanced Directive, such as Five Wishes, in that it can only be
signed when the person has a serious illness or condition or is near the end of life.
It must be based on the person's current medical condition.
Once the order is signed, it is put into effect immediately.
If a health care agent signs it, it must be consistent with the authority as specified
in the health care proxy.
This is one webinar in a series on end-of-life planning with and for individuals with intellectual
disability.
These trainings and other related trainings are also available on our website or the DDS
website.
Thank you.
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