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The ALS Association prepared the Patient Bill of Rights to inform
people living with ALS about their rights related to health care, health
insurance coverage, and obtaining comprehensive information about ALS, the
treatment, and prognosis.
The introduction outlines ALSA's reasons for preparing this Bill of
Rights. You also can download it as a pdf.
And don't miss our valuable list of resources
related to these rights.
As a person living with ALS, you have the right to:
1. You have the right to receive
comprehensive information about ALS, including options and resources for your
health care needs. This includes the right to communicate with your government
representatives regarding policies and practices of the FDA, NIH, DHHS and
other agencies that impact ALS. 1,2,4
People living with ALS have the right to obtain current,
understandable information about:
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the disease, its progression and prognosis,
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how to manage symptoms effectively,
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the full range of current treatment options including the known
costs, benefits and risks,
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the availability of and individual eligibility for clinical drug
trials,
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research advances into cause, treatment and cure, and
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policies and practices of federal agencies such as NIH, FDA and DHHS
that affect ALS research and clinical care.
People living with ALS have the right to comprehensive information
about specific interventions and resources for:
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psychological or psychiatric counseling,
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spiritual counseling,
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employment issues and work-place support,
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products and techniques to:
- provide maximum mobility and range of motion,
- support nutritional needs,
- assist with activities of daily living,
- continue communication, and
- maintain ventilation and prevent respiratory complications.
People living with ALS have the right to information about the
following resources:
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ALSA certified Centers providing specialized, comprehensive care for
people living with ALS,
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ALS clinics working in partnership with local ALSA chapters,
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ALSA support groups, chapters and National Office,
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local community sources for assistance and social services,
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government sources for information and services,
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national referral sources for information and assistance
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web sites and Internet sources of support and information, and
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other people with ALS who offer to speak with patients and their
family members about living with ALS.
2. You have a right to participate in decisions
about your health care including the right to accept, discontinue or refuse
treatments and therapy. 1,2,3,4,7
People living with ALS have the right to participate fully in all
decisions related to their health care. This includes the right to receive
medical treatments for which you have the resources to pay -- either through
insurance or privately, or you qualify for a government or other health benefit
program. It is acknowledged that some decisions are not in the sole purview of
the patient, but all decisions should include an opportunity for active
participation by the patient.
Patients have the right to make informed decisions to institute,
discontinue or decline treatments and therapies, as well as the right to change
a decision at any time. Informed treatment decisions should be based on
current, accurate and understandable information regarding the prognosis,
treatment, cost and management of ALS. People with ALS have the right to make
treatment decisions in advance of an urgent or emergency situation. Patient
choices about treatments should be respected and supported by their health care
professionals.
Examples of treatment decisions a person with ALS may need to make
include:
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participation in a drug trial,
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medication therapy,
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alternatives to eating for nutritional support (P.E.G.),
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ventilation (breathing) support (non-invasive and tracheostomy),
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assistive, augmentative communication devices,
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advance directives,
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end-of-life care -- hospice, emergency interventions, palliative
care, comfort care.
3. You have the right to access ALS specialty care in a timely manner.
4(Not protected)
People with ALS have the right to receive specialty care from health
care providers credentialed, experienced and knowledgeable in treating patients
with ALS. Patients have a right to ask for information about the credentials,
experience and knowledge of their health care providers.
The range of disciplines best equipped to provide experienced,
knowledgeable ALS care and services include the following:
| neurologist specializing in ALS |
gastroenterologists experienced in inserting
percutaneous endoscopic |
pulmonologist experienced with noninvasive and
tracheostomy ventilation |
| gastrostomy (P.E.G.) |
physiatrist |
registered nurse |
| mental health counselor |
physical therapist |
respiratory therapist |
| orthotist |
psychologist (Ph.D.) or psychiatrist (M.D.) |
social worker (MSW or CSW) |
| occupational therapist |
registered dietitian |
speech and language pathologist |
People with ALS have the right to information and services that are helpful in
the management of ALS including psychological and social services, special
equipment to support activities of daily living, communication and basic
physiologic functions.
Patients and their family members have a right to a reasonable choice of
providers to ensure access to appropriate high-quality ALS health care. Access
to specialty ALS providers should be timely to make the diagnosis and initiate
treatment and supportive care as quickly as possible. A second opinion from a
qualified ALS physician should be available in a timely manner.
4. You have the right to receive health care that is coordinated and
individualized for you across the spectrum of home, hospice, hospital, nursing
home, outpatient, and work-place. 2,5
(Not protected)
Patients have the right to receive the level of care appropriate to their needs
in the setting that best meets their physical, financial, social and
psychological situation. Continuity of care is important to persons with ALS
and requires that health care providers and health plan personnel communicate
with the patient on an ongoing basis regarding anticipated changes in the level
and site of care - for example, home care, nursing home, hospice or hospital.
Patients are encouraged to discuss necessary workplace accommodations openly
with employers in order to be able to continue to work as long as possible. If
you can perform the essential functions of your job, even if you require
reasonable accommodations, your employer cannot discriminate against you with
respect to your wages, hours, terms and conditions of employment.
5. You have the right to access health care benefit coverage without
discrimination based on your ALS diagnosis or physical disability.
5
People with ALS who are eligible for health plan coverage under the plan's terms
and conditions, must not be discriminated against in enrollment practices or in
the delivery of health care services based on disability.
6. You have the right to obtain clear, timely information regarding your health
plan including benefits, exclusions and appeal procedures.
4,6
People living with ALS have a right to timely, understandable information on a
range of issues related to their health plan including:
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types and choices of health plans and cost of premiums,
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out-of-pocket expenses, catastrophic cost limits, and lifetime maximums,
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covered benefits and required authorizations, service restrictions and
limitations on
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services or choice of health care provider,
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how coverage decisions (including drug formularies) are made and by whom,
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procedure for appeals and arbitration,
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cost of medications, services and equipment not covered by health plan,
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clear indication as to whether home care (skilled and unskilled), hospice and
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nursing home care are covered benefits.
Patients have a right to a full and fair review of their benefit claims.
7. You have the right to access your medical records and have the
information in your records explained to you. (Not protected) People with ALS
have the right to request and receive a copy of their medical records and to
have the information in their records explained or interpreted in lay language.
8. You have the right to prepare an advance directive to tell health care
providers your wishes regarding emergency and end-of-life treatment choices.
1,2,4,7
An advance directive is a document allowing a person to give directions about
future medical care or to designate another person to make medical decisions if
the individual loses decision-making capacity. Advance directives may include
living wills, durable powers of attorney, right to die, or similar documents
expressing the individual's preferences as specified in the 1990 Patient
Self-Determination Act.
People living with ALS have the right to make advance directives concerning
treatment with the expectation that the directives will be honored by health
care providers. Advance directives refer to legal documents outlining a
patient's preferences regarding treatment choices such as tracheostomy and
ventilation support. Terminology and interpretation related to the laws
governing advance directives differ by state, but the overall purpose is to
assure that individuals are treated with dignity and that treatment decisions
are respected by their family and health care providers. Patients are
encouraged to seek out information, laws and procedures in their state of
residence.
9. You have the right to receive care that is considerate and respects your
dignity, your cultural, psycho-social and spiritual values and your privacy.
You have this right no matter what choices you make about treatments and
therapy, what your disabilities related to ALS might be or what your financial
situation is. 1,2
People with ALS have a right to receive considerate, respectful care and
treatment without discrimination based on the ALS diagnosis, the related
disabilities and limitations or financial considerations.
10. You have the right to know that the information about you and your medical
condition will be held confidential by your health care providers.
1,2,3,4
Maintaining patient confidentiality is a basic responsibility and ethical
obligation of all health care professionals and organizations. Patients have a
right to have their medical records maintained confidentially by the
professionals and organizations providing health care, unless the patient has
agreed to waive confidentiality protection as when required for some research
purposes. People with ALS have a right to communicate in confidence with their
health care providers.
11. You have the right to receive support to enhance or maintain your quality
of life and have your family involved in all aspects of your health care.
2
This includes: support to continue employment, social support to increase access
to public spaces for maximum mobility -- convenient parking, etc.,
psychological support so that you will be able to continue to express your
feelings, thoughts and ideas, and care and services provided in an atmosphere
of hope.
Footnotes
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AHA = American Hospital
Association
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JCAHO = Joint Commission
on Accreditation of Health Organizations
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MEDICARE =
condition of health care providers' participation in program
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NHC =
National Health Council's "Putting Patients First"
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ADA =
Americans with Disabilities Act
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ERISA =
Employee Retirement Income Security Act
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PSDA =
Patient Self-Determination Act of 1990
Read through our list
of resources . The introduction outlines ALSA's reasons for preparing
this Bill of Rights. Or download it as a
pdf.
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