Source: http://health.ny.gov/professionals/patients/patient_rights/palliative_care/2011-12-14_questions_and_answers.htm
Timestamp: 2016-08-30 14:52:39
Document Index: 444417658

Matched Legal Cases: ['§2997', '§2997', '§2997', '§2997', '§2997', '§2997', '§2997', '§2997', '§2997', '§2997', '§4002', '§ 2997', '§2997']

Palliative Care Access Act - Dear CEO/Administrator Letter
> Questions and Answers for Providers
General Questions about Palliative Care
1) Question: What is palliative care?
2) Question: Is palliative care the same thing as hospice?
General Questions about the Palliative Care Access Act
3) Question: What is the difference between the Palliative Care Access Act (PHL §2997-d) and the Palliative Care Information Act (PHL §2997-c)?
4) Question: Which types of entities are subject to this law?
5) Question: What does this law require those entities to do?
6) Question: Who are the patients/residents that may benefit from this law?
7) Question: What are "advanced life-limiting conditions or illnesses"?
Questions about the Requirement to Provide Access to Palliative Care Information and Counseling
8) Question: What is required of hospitals and nursing homes in the provision of "access to information and counseling" concerning palliative care and pain management options appropriate to the patient?
9) Question: What type of information and counseling should be made available to patients/residents of hospitals and nursing homes?
10) Question: Are there any circumstances in which access to information and counseling about palliative care and pain management options need not be provided?
11) Question: If palliative care information and counseling is offered once, should it be offered again?
12) Question: How would a hospital or nursing home document that it has provided access to information and counseling services?
13) Question: When the patient/resident lacks capacity to make medical decisions, who should receive the offer of information and counseling?
14) Question: What is required of home care agencies including long term home health care programs (LTHHCP), in the provision of "access to information and counseling" concerning palliative care and pain management options appropriate to the patient?
15) Question: What is required of enhanced assisted living residences and special needs assisted living residences in the provision of "access to information and counseling" concerning palliative care and pain management options appropriate to the patient?
Questions about the Requirement to Facilitate Access to Palliative Care Services
16) Question: What types of palliative care options, including pain management options, should be considered and how should they be framed?
17) Question: What does it mean to "facilitate access to palliative care"?
18) Question: Must the care be provided by a practitioner certified in palliative care?
19) Question: Are there certifications in palliative care for clinicians?
20) Question: My organization does not employ any physicians with board certification in hospice and palliative medicine, or any other professionals with palliative care certifications. Are we required to recruit new staff to comply with this law?
21) Question: Are small or rural hospitals, nursing homes, home care agencies, and enhanced assisted living residences and special needs assisted living residences exempt from §2997-d in the development of palliative care services?
22) Question: When is palliative care offered?
23) Question: Who identifies a change in condition necessitating a palliative care evaluation or consultation?
24) Question: What is the responsibility of the home care agencies, long term home health care programs, enhanced assisted living residences and special needs assisted living residences for facilitating access to palliative care services?
25) Question: If a patient has been diagnosed with a terminal illness and certified as meeting the criteria for hospice, would referral to hospice meet the nursing home's/home health agency's/residence's obligation to facilitate access to palliative care?
26) Question: How would a provider document that it has facilitated access to palliative care services?
Compliance with PHL §2997-d: Palliative Care Access Act (PCAA)
27) Question: What are the penalties for failure to comply with this requirement?
1. Question: What is palliative care?
Answer: Palliative care, as defined by the law, is "health care treatment, including interdisciplinary end-of-life care, and consultation with patients and family members, to prevent or relieve pain and suffering and to enhance the patient's quality of life, including hospice care" PHL § §2997-c and 2997-d.
2. Question: Is palliative care the same thing as hospice?
Answer: Hospice care is a type of palliative care for people who are terminally ill, if the disease runs its normal course[1]. When medical treatments cannot offer a cure, hospice provides care, comfort, and support for persons with life-threatening illnesses and their families. Palliative care, by contrast to hospice, is appropriate at any stage of a serious illness, whether that illness is potentially curable, chronic or life-threatening. Palliative care is appropriate for a much broader group of patients than hospice and, unlike hospice, may be provided in conjunction with curative or life-prolonging treatment.
Both hospice and palliative care offer a personalized plan of care, delivered by an interdisciplinary team, which incorporates what is important to the patient and his or her caregivers in order to achieve the best possible quality of life for patients and families.
For more information about hospice, click here.
3. Question: What is the difference between the Palliative Care Access Act (PHL §2997-d) and the Palliative Care Information Act (PHL §2997-c)? Answer: The Palliative Care Access Act (PCAA) is broader than the Palliative Care Information Act (PCIA) because:
It applies directly to hospitals, nursing homes, home care agencies, enhanced assisted living residences and special needs assisted living residences, whereas the PCIA applies to physicians and nurse practitioners in all settings including private offices and health care facilities; It applies to patients/residents with "advanced life-limiting conditions or illnesses who might benefit from palliative care" and not just those with a terminal illness or condition as defined by law[2];
It requires, not only an offer of information and counseling, but also that the covered health care provider or residence "facilitate access to appropriate palliative care consultations and services, including associated pain management consultations and services."
4. Question: Which types of entities are subject to this law?
Answer: Hospitals, Nursing Homes, Certified Home Health Agencies (CHHAs), Licensed Home Care Services Agencies (LHCSAs), Long-Term Home Health Care Programs (LTHHCPs), Special Needs Assisted Living Residences, and Enhanced Assisted Living Residences are subject to requirements of this law.
5. Question: What does this law require those entities to do?
Answer: The covered providers and residences must provide access to information and counseling regarding options for palliative care appropriate to patients/residents with advanced life-limiting conditions and illnesses who might benefit from palliative care services. These providers and residences must also facilitate access to appropriate palliative care consultation and services including associated pain management consultation services consistent with patients'/residents' needs and preferences. When a patient/resident lacks capacity to make health care decisions, providers and residences must also have policies and procedures in place to identify the patient's/resident's legally-authorized health care decision-maker and provide access to information and counseling to that person.
6. Question: Who are the patients/residents that may benefit from this law?
Answer: The Palliative Care Access Act is intended to benefit patients/residents with advanced life-limiting conditions or illnesses.
7. Question: What are "advanced life-limiting conditions or illnesses"?
Answer: An advanced life-limiting condition is generally understood to mean a medical condition, causing significant functional and quality of life impairments, that is not likely to be reversible by curative therapies and that is likely to progress over time and ultimately contribute to physiological and functional decline and shortened survival.
Health care providers should implement policies and tools for identifying such patients. Sample tools are available at www.capc.org/tools-4-palliative-care-programs/clinical-tools. Some examples of patients with advanced, life-limiting conditions who should receive consideration for palliative care information, counseling, and services include, but are not limited to:
Patients/residents receiving curative therapies, who are experiencing distressing side effects of the therapies and/or symptoms of the illness, including need for information about treatment options and their pros and cons, family distress, and depression or anxiety associated with the diagnosis;
Patients/residents with:
Metastatic or locally extensive solid tumors whether continuing to benefit from cancer treatment, or not;
Hematological malignancies, whether or not therapy is likely to produce cure or remission, but for which there still are distressing side effects; HIV/AIDS with elevated viral load or depressed CD4+ count despite Highly Active Antiretroviral Therapy (HAART);
Congestive heart failure or other serious or life-threatening chronic cardiac condition;
Chronic obstructive pulmonary disease or other serious or life-threatening pulmonary condition;
Cirrhosis or other serious or life-threatening hepatic condition, whether or not the patient is seeking a transplant;
Renal failure requiring dialysis, whether or not the patient is seeking a transplant; Acute brain injury requiring more than five days of mechanical ventilation;
Any serious illness, requiring ongoing symptom management especially uncontrolled pain, nausea and vomiting, dyspnea, malignant bowel obstruction, depression, anxiety, agitation, and constipation;
ICU admissions from a nursing home, post-cardiac arrest, or length of stay of 10 days or more;
Dementia, at the last stage of the disease where there is evidence of feeding difficulties, aspiration, functional dependency, and recurrent infection;
Multiple chronic diseases with functional decline or weight loss consistent with diagnoses of debility or failure to thrive;
Any other progressive, incurable condition that has led to more than one hospitalization during the past six months.
8. Question: What is required of hospitals and nursing homes in the provision of "access to information and counseling" concerning palliative care and pain management options appropriate to the patient?
Answer: Hospitals and nursing homes must provide patients with an advanced life-limiting condition or illness, who might benefit from palliative care, with access to information and counseling concerning palliative care and pain management services appropriate to the patient. These institutions must assure that employed and affiliated physicians and nurse practitioners are compliant with the Palliative Care Information Act (PCIA) which requires these clinicians to offer terminally ill patients information and counseling about prognosis, the range of options appropriate to the patient/resident, and pain and symptom management. Hospitals and nursing homes must also ensure that physicians and nurse practitioners offer the same type of counseling appropriate to patients with advanced life-limiting conditions. For more information about complying with the PCIA click here. Hospitals and nursing homes should consider whether their patient and staff education programs and clinical protocols or pathways should be amended to provide access to the required information and counseling.
See Question 13 for information concerning access to palliative care information and counseling for patients/residents who lack capacity to make medical decisions.
9. Question: What type of information and counseling should be made available to patients/residents of hospitals and nursing homes?
Answer: In hospitals and nursing homes, where physicians and nurse practitioners are primarily responsible for patient care, information and counseling must be compliant with the PCIA and must be offered not just to patients with a terminal illness, but also to patients with advanced life-limiting illnesses and conditions. The information and counseling offered must be appropriate to the patient and must include:
Risks and benefits of various options; and
The information and counseling must be "appropriate" to the patient, meaning it must be "consistent with applicable legal, health and professional standards; the patient's clinical and other circumstances; and the patient's reasonably known wishes and beliefs." This includes, but is not limited to, the patient's psychosocial circumstances and cultural and religious beliefs. Click here for resources on cultural and spiritual considerations in palliative care.
Research shows that the majority of patients in the advanced stages of a life-limiting illness and their family members want a great deal of information about their prognosis and options. However, a significant minority prefer only limited information. In addition, according to the literature, information needs, patient preferences, and options may need to be revisited as the disease progresses. Thus, patient preferences vary and individualized assessment is necessary.
The Department recognizes that conversations with patients about palliative care options are difficult and cannot be approached in a one-size-fits-all manner. The delivery of palliative care and end-of-life counseling need not, and should not, be the same for every patient. The practitioner should be sensitive to the patient's emotional cues, preferences, and ability to absorb information. More than one conversation is often needed in order to provide the patient with an opportunity to understand and weigh his or her options.
For more information about the elements of palliative care counseling and end-of-life counseling, click here.
10. Question: Are there any circumstances in which access to information and counseling about palliative care and pain management options need not be provided?
Answer: Under this law, hospitals, nursing homes, home care agencies, enhanced assisted living residences and special needs assisted living residences must "provide access" to information and counseling to patients/residents with advanced life-limiting conditions and illnesses who might benefit from palliative care, including associated pain management, services. Patients/residents have the right to accept or decline an offer of information and counseling.
In hospitals and nursing homes, the institutions should assure that the physicians and nurse practitioners who provide care under their auspices offer appropriate information and counseling consistent with the Palliative Care Information Act, not just to terminally-ill patients, but also to patients with advanced life-limiting illnesses and conditions. However, information and counseling need not be provided if the patient/resident (or his/her authorized decision-maker, when the patient/resident lacks medical decision-making capacity) declines the offer. The offer and the patient's response should be documented in the medical record. The provider should repeat the offer, as appropriate, consistent with changes in the patient's/resident's condition and the treatment or care options available to him/her.
In a home care setting, the agency must, consistent with its licensure or certification, assess or evaluate the patient/resident, monitor the patient's/resident's condition, identify patients/residents who might benefit from palliative care, notify the patient's/resident's physician or nurse practitioner of the patient's/resident's condition and of the need for a palliative care evaluation, and arrange for follow up. They should also notify the patient's/resident's physician or nurse practitioner if the patient/resident or patient's/resident's family requests information about palliative care.
In an enhanced or special needs assisted living residence, the residence is required to include in the medical evaluation form questions concerning whether the resident is appropriate for/might benefit from palliative care and the services that are indicated and ordered. EALRs and SNALRs must notify the resident's physician or nurse practitioner of changes in condition. They should also notify the resident's physician or nurse practitioner if the resident or resident's family requests information about palliative care.
Patients/residents may choose to accept or decline the physician's or nurse practitioner's offer of information and counseling.
11. Question: If palliative care information and counseling is offered once, should it be offered again?
Answer: It is important to recognize that patients'/residents' needs and desire for information may change over time. Palliative care information and counseling should be offered as often as necessary to assure that the patient/resident has the information he or she wants at each stage of his or her illness and to permit appropriate control of the patient's/resident's symptoms and optimize his/her quality of life. For example, as the patient's/resident's condition changes or the availability of social supports changes, the patient/resident and his/her family may need to re-evaluate the treatment or care plan. 12. Question: How would a hospital or nursing home document that it has provided access to information and counseling services?
Answer: Hospitals and nursing homes should document in the patient's/resident's medical record:
The offer of palliative care information and counseling;
Who made the offer;
The patient's (or medical decision-maker's) response;
The general substance of the discussion, including what options, if any, were discussed and chosen; and How the service will be provided by indicating whether it will be provided directly or by referral, and the provider to which the patient was referred if any.
13. Question: When the patient/resident lacks capacity to make medical decisions, who should receive the offer of information and counseling?
Answer: When the patient/resident lacks capacity, providers must adopt policies that address identifying the person who is legally-authorized to make medical decisions for the patient and providing access to information and counseling to that person.
For adult patients/residents, the medical decision-maker is typically the health care agent designated in a health care proxy. If there is no health care proxy, and the patient is in a hospital, nursing home, or hospice[3], the appropriate surrogate under the Family Health Care Decisions Act (Public Health Law Article 29-cc) is the decision-maker. Sometimes, there is a living will or Medical Orders for Life-Sustaining Treatment (MOLST) form that will reflect the patient's/resident's treatment preferences.
For minor patients, the medical decision-maker is typically the parent. It is usually best to get both parents involved, if possible.
For other patients/residents including those with a developmental disability, there may be a surrogate appointed pursuant to the Surrogate Court Procedure Act.
For patients/residents with a mental illness, there may be a guardian authorized to make medical decisions under Article 81 of the Mental Hygiene Law.
Reliance on a health care agent, surrogate or guardian to make health care decisions requires a determination by a physician and another health care practitioner that the patient/resident lacks capacity to make such decisions (in some cases, a determination by two physicians is required). The rules governing capacity determinations and consent by health care agents, surrogates, and guardians are complex. Seek legal counsel, if you are not familiar with these requirements.
The Family Health Care Decisions Act generally applies to institutional settings, but also applies to hospice programs both in the community and in facilities. In all settings, the MOLST form may be used to put in place non-institutional orders that include both Do Not Resuscitate (DNR) and Do Not Intubate (DNI).
14. Question: What is required of home care agencies including long term home health care programs (LTHHCPs), in the provision of "access to information and counseling" concerning palliative care and pain management options appropriate to the patient?
Answer: In home care settings, the patient's physician or nurse practitioner, not the home care agency or program, is responsible for discussing diagnosis, prognosis, and options for palliative care. The home care agencies and LTHHCPs must have policies and procedures for how information and counseling about palliative care will be given and access to palliative care services will be facilitated for patients/residents with advanced life-limiting conditions or illnesses.
To provide access to palliative care information and counseling:
Certified home health agencies and long term home health care programs, and any LHCSA that is principally responsible for the patient's home health care needs, must include in the assessment of any patient with an advanced life-limiting condition or illness consideration of palliative care needs.
Licensed home care services agencies must assure that the plan of care is based on a professional assessment that includes consideration of palliative care needs for patients with advanced, life-limiting conditions. All home care agencies and long term home health care programs must monitor the patient's condition and alert the patient's physician or nurse practitioner of any significant changes that might indicate a need for a palliative care evaluation. Home care agencies and programs must also notify the patient's physician or nurse practitioner of any request by the patient (or the patient's authorized medical decision-maker, if the patient lacks capacity) for information about palliative care or pain management.
The notification and coordination should be documented in the patient's care/clinical record and plan of care. Home care agencies and long term home health care programs should consider whether their patient/resident and staff education programs and clinical protocols or pathways should be amended to promote access to palliative care information and counseling. Home care agencies should also train staff about palliative care, appropriate triggers for palliative care, and the array of palliative care services that can be effective in reducing disease burden and improving quality of life, so that they can serve as effective liaisons between patients and their physicians or nurse practitioners.
15. Question: What is required of enhanced assisted living residences and special needs assisted living residences in the provision of "access to information and counseling" concerning palliative care and pain management options appropriate to the patient?
Answer: In enhanced assisted living residences (EALRs) and special needs assisted living residences (SNALRs), the resident's physician or nurse practitioner, not the residence, is responsible for discussing diagnosis, prognosis, and options for palliative care. EALRs and SNALRs must have policies and procedures for how information and counseling about palliative care will be given and access to palliative care services will be facilitated for residents with advanced life limiting conditions or illnesses.
EALRs and SNALRs identify the needs of each resident through coordination with the resident's service and medical providers. To assist in that effort, EALRs and SNALRs are required to include in the medical evaluation form questions concerning whether the resident might benefit from palliative care and the services that are indicated. If a potential need for palliative care is identified, this need must be included in the resident's individualized service plan, and the EALR or SNALR must coordinate with the appropriate service providers to ensure that the resident has access to information and counseling regarding palliative care services and to the services selected and ordered. In addition, these residences must notify the resident's physician or nurse practitioner of changes in the resident's condition. They must also notify the resident's physician or nurse practitioner if the resident or resident's family requests information about palliative care or pain management.
EALRs and SNALRs should consider whether their resident and staff education programs and clinical protocols or pathways should be amended to promote access to the required information or counseling. The notification and coordination should be documented in the patient's case management notes and individualized service plan. Questions about the Requirement to Facilitate Access to Palliative Care Services
16. Question: What types of palliative care options, including pain management options, should be considered and how should they be framed?
Answer: Although palliative care is defined in PHL §2997-d, palliative care is broadly understood as focusing on the reduction of illness burden and suffering, support for coping and adaptation, and maintenance of quality of life. It is also understood that palliative care can be provided at a generalist and at a specialist level. Whether generalist level or specialist level, palliative care broadly comprises interventions that address any of the arrays of problems that cause suffering or create illness burden during the course of a life-limiting condition or illness.
The palliative care plan may be developed and implemented, with appropriate patient consent, through the coordinated efforts of physicians, nurses, social workers, clergy, (if the patient/resident wishes) and other service providers. The care plan should be sensitive to cultural and religious considerations and may target:
Family disruption or distress, caregiver burden or social isolation
Poor communication leading to uncertainty about the goals of care or to a lack of advanced care planning (e.g. no living will, no medical orders for life sustaining treatment (MOLST), no health care proxy)
Need for practical help at home
Access to palliative care or the facilitation of access to palliative care will vary by provider type. Some key considerations in discussing options with patients/residents and their families or health care decision-makers are:
Communication about prognosis and treatment options will typically be led by the patient's/resident's physician or nurse practitioner. Although studies have shown that prognostication is difficult, many patients/residents value the knowledge, if applicable, that 'time may be limited' or 'people with this disease often have months but not years.' To communicate about the medical appropriateness of specific therapies, clinicians must have information about treatment availability, the evidence in support of effectiveness, and the risks or burdens that should be anticipated. The specific treatments or services that constitute palliative care may be provided alone or in conjunction with disease-modifying therapies. A discussion of options when patients are very ill should help the patient or his or her health care decision-maker understand that individuals vary in how they judge the balance between risks/burdens and potential benefits. Some patients prioritize comfort and support, and unless the benefits are very likely or very substantial do not want downsides like side-effects or time away from home to compromise quality of life. Other patients/residents choose substantial risk or burdens for even a small chance of benefit. The preferences and values of patients/residents are critical in establishing treatment goals and patients/residents should be encouraged to communicate them to their physicians and other health professionals.
Discussions about these options therefore, must be individualized and guided by the availability and appropriateness of disease-modifying therapy, the need for palliative treatments and services; and an understanding of the patient's/resident's values, preferences and goals. It should be framed by a broad understanding of prognosis, gently shared with the patient/resident and/or decision-maker as appropriate, with as accurate an analysis of risk/burden versus benefit as possible, given the complexities of the situation. Discussion about options often requires multiple conversations.
Some key considerations in developing a palliative care plan are:
Evaluation and treatment should be comprehensive and patient-centered, with a focus on the central role of the family in decision-making. Care providers should regularly assist patients and families to understand changes in conditions and the implications of these changes as they relate to ongoing and future care and goals for care.
Deciding among options should be guided by prognosis, the availability and medical appropriateness of disease-modifying therapy and the patient's/resident's goals for care. For some patients/residents, these decisions may also be guided by religious or cultural considerations concerning end of life care.
Specialist palliative care may be available for selected patients through consultation with a palliative care service or, if appropriate, referral to a hospice agency. For those illnesses with advanced disease modifying therapies, such as cancer, congestive heart failure and chronic obstructive pulmonary disease, there often is a prolonged period during which the best therapeutic approach is one that simultaneously offers aggressive treatment for the disease and supportive palliative care.
Patients/residents (or if the patient/resident lacks medical decision-making capacity, his or her authorized health care decision maker) must consent to any treatment. Generally, informed consent requires that the patient/resident or his or her decision-maker be given appropriate, accurate information about the risks and burdens and likely benefits of each treatment option. Consent to treatment, whether disease-modifying or palliative, should be informed by weighing risks and burdens against benefits.
17. Question: What does it mean to "facilitate access to palliative care?"
Answer: Providers and residences must "facilitate access" to palliative care by providing palliative care and/or pain management services directly and/or by collaborating with specialized providers of palliative care and pain management services, including hospice.
It is understood that palliative care can be provided at a generalist level and at a specialist level. Generalist-level palliative care includes the services that comprise the basic elements of palliative care, such as assessment, advance care planning, pain and symptom management, and assistance with eating or ambulation. While generalist-level palliative care does not require the engagement of specialized staff, it does entail a heightened attention to, and formal processes for, patient-appropriate assessment, communication with the patient and his/her family, coordination among providers, relief of illness burden, and supporting the patient's goals for care. All providers and residences are required to provide directly generalist-level palliative care consistent with their licensure, regulations, and professional standards. In a hospital, nursing home or home care agency, this includes:
Assessment and/or observation and monitoring of clinical and psychosocial needs, Development of a treatment or care plan, with the patient and/or the patient's family and/or health care decision-maker, based upon patient's condition, goals for care, preferences, and informed consent;
Consideration of advance care planning; Pain and symptom management;
Assistance with eating, ambulation and other functional limitations; and Discharge planning. In enhanced and special needs assisted living residences, certain generalist-level palliative care services must also be provided in accordance with their specific certification, although medical care is not generally offered. At a minimum, these residences must act upon the medical evaluation of the resident's primary physician or nurse practitioner and other information received with regard to orders for palliative care services. They must also monitor the resident's condition, alert the resident's physician or nurse practitioner to any abrupt or progressive changes, and provide case management to assist the resident in accessing services agreed upon by the resident and physician or nurse practitioner.
Specialist-level palliative care refers to the coordinated delivery of best-practice interventions based on a comprehensive assessment of the patient and family. Specialist-level palliative care requires the input of an interdisciplinary team of professionals, usually including, at minimum, access to a physician, nurse, social worker and pastoral care provider; these professionals have discipline-specific, specialist-level skills in palliative care acquired through advanced training. The professional teams work under the auspices of hospital-based or nursing-home based palliative care consultation teams, hospice programs, or community-based programs.
Not every provider will have the resources to offer specialist-level palliative care or the wide array of services that may be necessary to reduce patient and family distress and disease burden. However, providers and residences must, in addition to providing generalist-level palliative care, facilitate access to specialist-level palliative care through collaborations with specialized providers or provide such care directly.
To the extent that a patient requires specialist-level palliative care, or a palliative care service, that is beyond the scope of a provider's or residence's services, the provider or residence must facilitate access by demonstrating that it has: Developed collaborations with other providers in the community (or, appropriate consultation arrangements with specialists beyond the community), including hospice, to address the palliative care and associated pain management needs of its patients/residents;
Developed protocols for referrals, consultations and transitions of care with those providers; and
Assured that such protocols include agreement by the patient/resident for the referral, notification of the collaborating provider that a referral has been made, and an agreement by the collaborating provider to follow up with the patient/resident.
For example, a collaborative agreement with a hospice is an appropriate beginning, if the hospice provides non-hospice palliative care or if the patient/resident qualifies for hospice care. Providers may also want to enter into consultation arrangements with pain management and skilled palliative care specialists, clergy, and complementary care providers. 18. Question: Must the care be provided by a practitioner certified in palliative care?
Answer: Not necessarily. Generalist palliative care services may be provided by a variety of practitioners, including physicians, nurse practitioners, nurses, social workers, and spiritual care providers who are qualified by education, training, and experience to provide care, including but not limited to the relief of symptoms and psychological and spiritual support for the patient/resident and his/her family. When generalist-level palliative care is not sufficient, specialist-level palliative care should be provided, directly or through referrals, consultations or other collaborative arrangements. Specialist-level palliative care practitioners are those professionals who have discipline-specific, specialist-level skills in palliative care acquired through advanced training and specialized certifications.
19. Question: Are there certifications in palliative care for clinicians?
Answer: Certain national boards offer certifications/credentialing in palliative care including the National Board for the Certification of Hospice and Palliative Nursing and the American Board of Medical Specialties (ABMS). The National Association of Social Workers and the National Hospice and Palliative Care Organization offer Advanced Certification for hospice and palliative care social workers. 20. Question: My organization does not employ any physicians with board certification in hospice and palliative medicine, or any other professionals with palliative care certifications. Are we required to recruit new staff to comply with this law?
Answer: It is understood that palliative care can be provided at a "generalist" level or at a "specialist" level. Providers need not directly provide specialist-level palliative care in order to comply with the law. However, they must provide a generalist level of palliative care appropriate to the setting. While generalist-level palliative care does not require the engagement of specialized staff, it does entail the provision of the basic elements of palliative care including assessment, advanced care planning, pain and symptom management, a heightened attention to communication with the patient and his/her family, coordination among providers, relief of illness burden, and supporting the patient's goals for care. Providers must also establish relationships with providers of specialist-level palliative care or provide that level of care directly. See Question 17 above.
21. Question: Are small or rural hospitals, nursing homes, home care agencies, enhanced assisted living residences and special needs assisted living residences exempt from §2997-d in the development of palliative care services?
Answer: No, all of the named entities must comply with PHL §2997-d. However, the Department of Health will take into consideration the following factor in enforcing the law:
Access and proximity of palliative care services;
Availability of hospice and palliative care board certified practitioners and other related workforce staff;
Geographic factors; and
22. Question: When is palliative care offered?
Answer: A palliative care assessment should be conducted on admission, when the patient's/resident's condition changes, and upon discharge palliative care should be offered based on the assessment as appropriate. The admission process is when palliative care is traditionally explained and offered, and the care plan process drives whether a change in condition might prompt another discussion. As the patient's/resident's condition progresses, the need for palliative care typically intensifies, and the care plan must be re-evaluated. Hospice programs (including those that offer non-hospice palliative care to patients whose condition is not terminal) are a valuable resource for assuring both the provision of comprehensive and high-intensity palliative care and the continuity of care throughout the progression of the illness. 23. Question: Who identifies a change in condition necessitating a palliative care evaluation or consultation?
Answer: Anyone on the care team may identify the changed condition and potential need for a discussion about palliative care; however, a physician, nurse practitioner, or a physician assistant, might be needed to assist with a new order, and social workers are often skilled at planning for discussions that assist residents and their representatives identify wishes and goals, including palliative care needs. Again, the entire care team is important for identifying changes in conditions and recommendations to discuss goal setting.
24. Question: What is the responsibility of the home care agencies, long term home health care programs, enhanced assisted living residences and special needs assisted living residences for facilitating access to palliative care services?
Answer: Home care agencies and long term home health care programs must incorporate into the care plan palliative care services ordered by the patient's physician or nurse practitioner; and review and update the care plan as need to address changes in the patient's condition and coordinate services, informal supports and community resources. They must notify the patient's authorized medical practitioner of the agency's assessment and/or any conditions or needs observed, including any conditions or needs that might be addressed through palliative care. These notifications should be documented in the patient's care/clinical record. Home care agencies and programs must ensure that services ordered by the patient's/resident's physician or nurse practitioner are implemented.
Enhanced assisted living residences and special needs assisted living residences should act upon the medical evaluation of the resident's primary physician or nurse practitioner and other information received with regard to orders for palliative care services. To assure that EALRs and SNALRs have the necessary information to do so, they must include in their medical evaluation forms questions concerning the resident's palliative care needs and services indicated. They must also monitor the resident's condition, alert the resident's physician to any abrupt or progressive changes, and provide case management to assist the resident in accessing services agreed upon by the resident and physician.
25. Question: If a patient has been diagnosed with a terminal illness and certified as meeting the criteria for hospice, would referral to hospice meet the nursing home's/home health agency's/residence's obligation to facilitate access to palliative care?
Answer: As indicated in Question 17, the nursing home, home health agency, or residence must, at a minimum, provide generalist-level palliative care and facilitate access to specialist-level palliative care through consultations, referrals, and other collaborative arrangements. For those patients who have a terminal prognosis of six months or less if the disease runs its normal course, a referral to hospice is one way to fulfill the obligation to facilitate access to specialist-level palliative care, provided that the hospice referral is consistent with the patient's preferences, values and goals for care. Close coordination and partnerships with specialized palliative care and hospice providers are valuable in achieving continuity of palliative care throughout the full course of an illness and across the continuum of care settings.
26. Question: How would a provider document it has facilitated access to palliative care services?
Answer: Hospitals and nursing homes should document the discussion with the patient or the patient's medical decision-maker, if the patient lacks capacity, and actions taken in response to the discussion which should include:
Completed patient assessment
Patient/resident diagnosis, prognosis, and goals of the patient/resident consistent with the philosophy or spiritual/cultural beliefs;
Palliative care/pain management options;
Palliative care services the patient/resident has chosen or declined;
Actions taken and referrals made, including provider of service(s);
Verification that the provider received the referral and is available to provide the service
Home care agencies and long term home health care programs should document in the medical record that they notified the patient's physician of a change in condition. The record should include what the physician ordered and agencies and LTHHCP must ensure that services ordered are implemented.
Enhanced and special needs assisted living residences must act upon the medical evaluation of the resident's primary physician or nurse practitioner. They should document in the case manager notes how what was included in the medical evaluation was implemented.
27. Question: What are the penalties for failure to comply with this requirement?
Answer: Violations of the Public Health Law are punishable by a civil penalty of up to $2,000. This penalty may be increased to up to $5,000 for repeat violations within 12 months that were a serious threat to health and safety of the individual or individuals involved. A willful violation of the Public Health Law is punishable by a term of imprisonment of up to 1 year and/or a fine of up to $10,000. In addition, a willful or grossly negligent failure to comply with substantial provisions of state laws governing the practice of medicine, or repeated occasions of negligence, can trigger a medical misconduct action.
[1] Effective June 1, 2011, "terminally ill" means, for purposes of the hospice program under New York State Law (PHL §4002), "an individual has a medical prognosis that the individual's life expectancy is approximately one year or less if the illness runs its normal course." By contrast, PHL § 2997-c and the Medicare program define terminal illness as a condition that is reasonably expected to cause death within six months.
[2] Under the Palliative Care Information Act (PHL §2997-c), a terminal illness or condition means an illness or condition which can reasonably be expected to cause death within six months, whether or not treatment is provided.
[3] The Family Health Care Decisions Act's amendment to authorize surrogate decision-making in hospice programs was signed into law on July 21, 2011 and took effect on September 19, 2011.