Palliative care is for patients at any stage of illness. It is designed to keep you out of the hospital and emergency department. Palliative care manages your pain or the symptoms that come with serious or chronic (long-lasting) illness. Your health care provider(s) and team of clinical specialists work together to provide the best quality of care for you and your family. Palliative care is a collaboration between an interdisciplinary clinical team and community-based clinicians. It alleviates pain and symptoms related to chronic or complex illness, with a focus on promoting or increasing quality of life. Palliative Care can be delivered in any setting, including but not limited to home-based, outpatient, inpatient, or even virtual setting, in some cases. It is designed to be supportive care that meets you where you are. Palliative Care clinicians may suggest that your primary care or specialty clinician make modifications to medication regimens, as not all palliative care providers prescribe medications.

Palliative care often includes care coordination to assist with community resources for durable medical equipment, counseling, transportation, and more. The care coordination also extends to getting all your community-based practitioners on the same page and contributing to a care plan that meets your goals and wishes overall.

Additionally, Palliative Care is meant to bridge the gap between a hospital or emergency room discharge and follow-up with a primary care clinician or specialist, which aims to reduce anxiety and stress. With its team-based, collaborative approach, it's a natural fit for Palliative Care to also support you and your family with advance care planning.

By anticipating and addressing the physical, emotional, and spiritual needs when dealing with a serious or complex illness, the Palliative Care team will include you and your family as part of the care team and care plan, providing all of the information needed to make choices that align with your wishes, values, and priorities.

Palliative Care adds an extra layer of support that may be combined with the care you are already getting. The palliative care team will make you comfortable by alleviating pain and symptoms from chronic or complex illnesses. Palliative Care will often also add care coordination to assist with community resources, as well as managing multiple clinicians who may be involved in your care, to ensure all care plans and goals align with your wishes and priorities. This typically also includes a medication review to confirm appropriateness and effectiveness, while also looking for potential drug interactions or unintended side effects.

By suggesting that you consider Palliative Care, a health care clinician is helping to access a variety of supportive resources to manage your serious or complex illness. Some common reasons for a Palliative Care referral include:

• Uncomfortable symptoms like pain, shortness of breath, nausea, or anxiety;
• A need for emotional, spiritual, or practical support related to your chronic or complex illness;
• Multiple visits to the hospital or emergency room within a year;
• Treatments are not working as well as they did in the past; and
• Complicated decisions needed about what treatments you should choose.

Anyone can ask for a Palliative Care referral. Asking for Palliative Care means you wish to have personalized care navigation to support you in alleviating your pain and symptoms from a chronic or complex illness. It also means that you value having an interdisciplinary team of both clinical and community-based clinicians collaborating on the care you want to receive.

If you feel like you and your family would benefit from assistance managing your chronic or complex illness, you can talk with your clinician about Palliative Care. You might ask:

• What type of treatments will be added if I receive Palliative Care?
• Can I pursue curative treatment while I receive Palliative Care?
• Will I continue to receive the care I am receiving now if I want it?
• Can I keep my same doctor or nurse?
• Is Palliative Care going to make it easier for me to live my life?
• Can you explain what Palliative Care is and how it works?

Share your personal beliefs, values, and goals with your health care clinician. Examples of questions you could ask may include:

• How can we make sure that my medical treatments and care plan fit within my religious and cultural values, beliefs and goals?
• Can we make changes to the treatments and/or care plan so there is no conflict with my spiritual or cultural practices?
• How will we make sure that I can tolerate or live with my symptoms and pain?
• What will you do if I develop pain or other uncomfortable symptoms later in my health care journey?

It is your choice to receive or stop receiving Palliative Care. If you feel that you do not need the extra support provided by Palliative Care, you can contact your primary clinician to ask that these services be discontinued.

No, it does not. It means that you want the benefit of an interdisciplinary team of professionals with specialized training who will collaborate to help you have the best life possible while you are living with your chronic or complex illness. Rather than giving up, you are working with this team to ensure that everything will be done to make you as physically and emotionally comfortable as possible. Palliative Care is focused on quality of life by managing pain and other symptoms associated with serious or complex illnesses. Palliative Care is not hospice care.

The goal of Palliative Care is to alleviate suffering and improve the quality of life for people of any age and at any stage of a chronic or complex illness. Palliative Care can enhance your level of comfort and help you achieve the highest possible quality of life. You can receive Palliative Care while you are undergoing treatments that may cure or reverse the effects of your illness. In fact, Palliative Care can help you cope with aggressive treatments by managing your pain and symptoms.

As disease progresses toward a terminal prognosis when curative treatment may be less effective, Hospice is a federal benefit that provides holistic comfort and care management for the patient and their loved ones, including bereavement counseling for up to 13 months after the patient ultimately passes away.

For more information, please visit the New York State Department of Health's Center for Hospice & Palliative Care Website.

No. Most hospitals offer some form of Palliative Care services, but there may be other community-based options in your area. These may include outpatient services, facility-based services in a nursing home or assisted living facility, or home-based care from a home care agency or licensed hospice provider who also has a palliative care service line. Please note that some types of Palliative Care services are not available in every county across New York State. You can ask your health care clinicians about availability in your area, or search for providers using the following links: Get Palliative Care (CAPC), Hospice and Palliative Care Association of New York State (HPCANYS) Healthcare Association of New York State (HANYS) and the Home Care Association of New York State (HCANYS).

Palliative Care is not a regulated benefit in New York State, meaning there is not a consistent way which it is billed or paid. Some commercial insurance plans, including Medicare and Medicaid, cover medical services that are considered Palliative Care. Some plans also cover supportive services. Ask to speak with a social worker or call your health plan if you have questions about your health care coverage. The Palliative Care providers should also be able to explain the payment options and health insurance coverage as part of the referral process that is meant to be information gathering.

Yes, it is available for children. Although chronic or complex illnesses do not occur as often in children as they do in adults, some children are born with or develop serious, potentially life-threatening diseases. These children, like adults, can receive Palliative Care at any age or stage of their illness, even if their life expectancy is long, and whether that illness is potentially curable, chronic, or life-threatening. The approach to Palliative Care for children will likely be different than that for adults, but the goal is the same: to provide holistic care to the child and family, education on their individual illness, to alleviate suffering and to promote quality of life and peace of mind.

Just as medical care for children differs from care for adults, so, too, does Palliative Care. The basic principles are the same: relief of physical, emotional, social and spiritual suffering. But the way that relief is provided may differ. For example, the doses and types of medications used to relieve pain and other symptoms in children may be different. Another important distinction is that children are very resilient, and even when they have a disease that cannot be cured, they are often able to handle therapies aimed at controlling the disease. Therefore, many children receive "disease-targeted" care and Palliative Care (that is, care aimed at keeping them comfortable) at the same time. Neither parents or children have to choose between having Palliative Care or pursuing treatment. They can do both simultaneously.

Because children (and families of children) who receive Palliative Care have different needs than adults, these children ideally should receive that care from pediatric professionals. In addition to their pediatricians and pediatric specialists, they may benefit from nurses and nurse practitioners who are trained in caring for chronically ill and/or seriously ill children. Child life specialists, trained professionals who focus on children's comfort, can help children express themselves through play. Music and art therapists with pediatric experience are very effective in doing the same thing. Likewise, pediatric social workers, chaplains, school counselors, psychologists, and psychiatrists can also help children and their families. All of these pediatric Palliative Care team members also work with, and provide comfort to, siblings of ill children, as well as their parents.

Perhaps the most challenging aspect of providing Palliative Care for children is that many people expect children to be healthy. When a child has a chronic or complex illness, family, friends, and even doctors, nurses and other medical personnel are not quite sure what to do or say. A big part of Palliative Care for children and their families is being able to communicate clearly and effectively with parents about what is happening, what the road ahead might hold, and perhaps most importantly, how to explain things to the child who is ill and their siblings.

This is certainly one of the very biggest challenges in taking care of a child with a serious illness. How much should we share? How do I answer scary questions? Who can guide me? Children are like adults in that every child is different, and therefore, the approach to talking to them must be individualized. Generally, children do best when information is shared with them. How that information is shared and whoever shares it will depend on personalities, such as how they handle difficult information, their age, their stage of development, and how much they want to know. If you are uncertain how to explain an illness and care plan to your child, and most parents are, seek assistance from your child's pediatrician, other healthcare workers involved in your child's care, or perhaps a trusted teacher, clergy, or family member.

Many of the larger children's hospitals in the state have pediatric Palliative Care teams. For those families who live in rural areas or who do not know of a nearby team, it would be wise to ask your child's pediatrician where you might find the right people to provide Palliative Care services. The pediatrician might know of a hospital-based team or even a home-based team. Additionally, sometimes home health agencies and licensed hospice providers can support your child, with the assistance of the pediatrician.

No, usually a child can continue to see their primary pediatrician as well as other medical specialists. Palliative Care offers additional support and specialty care in conjunction with your child's other care providers.

This cannot be answered with a simple "yes" or "no" because there is such variability in children's ages and developmental stages. For example, a two-year-old child cannot be informed, nor most likely could a ten-year-old with a severe, developmental delay. Generally, a 17-year-old with normal cognitive status should be informed. The challenge is the many children in between, including the typical 12-year-old child or the precocious eight-year-old child.

As a general guideline, sharing information with a child about diagnosis, prognosis, treatment, and Palliative Care options is appropriate, if the child can understand and appreciate the nature and consequences of the disease and trajectory of that disease, as well as the nature and consequences of treatment and Palliative Care options. You should discuss your child's ability to understand these issues and how much information should be shared with your physician. If you object to your child being offered information about diagnosis, prognosis and treatment options, you should discuss your concerns with your physician and health care team.

Your family will likely be faced with many decisions regarding your child's care and medical treatment throughout the course of their illness. Palliative Care providers have a wide expertise in pediatric diagnoses and can help answer questions and provide resources to help when making these decisions. Challenging topics for families to navigate include symptom management, goals of care, advance directives, treatment options, and, for some, the appropriate time to transition to end-of-life care.

The Palliative Care Information Act (PCIA) requires the attending clinician to provide terminally ill patients with information and counseling regarding Palliative Care and end-of-life options, including but not limited to:

• Prognosis;
• Range of treatment options appropriate to the patient;
• Risks and benefits of various options (regardless of the clinician's personal beliefs and values); and
• Patient's "legal rights to comprehensive pain and symptom management at the end of life."

Clinicians are also required to offer terminally ill patients' information regarding other appropriate aggressive or curative treatment options, if the patient wishes to initiate or continue treatments other than, or in addition to, Palliative Care. It is important that the attending clinician have a conversation with the patient and family about likely success of various treatments, as well as their potential impact on quality of life.

The Palliative Care Information Act (PCIA) focuses on patients with a medical condition that is expected to cause death within six months. However, information and counseling are also appropriate for patients with serious or complex illnesses who do not have a terminal prognosis. Patients may choose to accept or decline the offer of information and counseling.

The Palliative Care Access Act (PCAA) requires special needs assisted living residences and enhanced assisted living residences to provide seriously ill patients and their families with access to information and counseling regarding Palliative Care treatment options. This includes facilitating access to appropriate Palliative Care consultation and services, including pain management, consistent with patient needs and preferences.

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 Palliative Care Information Act (PCIA) applies to clinicians 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; and
• It requires not only an offer of information and counseling but also facilitation of access to appropriate Palliative Care consultations and services.

Yes, they do apply to children. Please see the Pediatric FAQ section for more details. Hyperlink to follow.

Palliative Care is for patients at any stage of complex or chronic illness to manage pain and/or symptoms associated with a short-term diagnosis or progressive disease, focusing on quality of life. It is designed to keep patients out of the hospital and emergency department with a coordinated care plan that is primarily based on community resources and care. A team of clinical interdisciplinary specialists work together to provide the best quality of care for the patient, in collaboration with their community-based clinicians. Palliative Care can be delivered in any setting, including but not limited to home-based, outpatient, inpatient, or even virtual settings, in some cases. It is designed to be supportive care for patients and clinicians alike. Palliative Care clinicians may suggest that primary care or specialty clinicians make modifications to medication regimens, as not all Palliative Care providers prescribe medications.

Palliative Care often includes care coordination to assist with community resources for durable medical equipment, counseling, transportation, and more. The care coordination also extends to getting all community-based practitioners on the same page and contributing to a care plan that meets patients' goals and wishes overall.

Additionally, Palliative Care is meant to bridge the gap between a hospital or emergency room discharge and follow-up with a primary care clinician or specialist, which aims to reduce anxiety and stress. With its team-based, collaborative approach, it's a natural fit for Palliative Care to also support clinicians with advance care planning with their patients.

The goal of Palliative Care is to alleviate suffering and improve the quality of life for people of any age and at any stage of a chronic or complex illness. Unlike Hospice, Palliative Care allows patients to simultaneously receive curative treatments while also receiving supportive care for pain and other symptoms.

As disease progresses toward a terminal prognosis when curative treatment may be less effective, Hospice is a federal benefit that provides holistic comfort and care management for the patient and their loved ones, including bereavement counseling for up to 13 months after the patient ultimately passes away.

• For more information, please visit the New York State Department of Health's Center for Hospice & Palliative Care Website.

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 clinicians should implement policies and tools for identifying such patients. Sample tools for creating a palliative care program are linked here.

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 Palliative Care Information Act (PCIA) applies to clinicians 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; and
• It requires not only an offer of information and counseling but also facilitation of access to appropriate Palliative Care consultations and services.

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.

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 patients'/residents' legally authorized health care decision-maker and provide access to information and counseling to that person.

The Palliative Care Access Act (PCAA) is intended to benefit patients/residents with advanced life-limiting conditions or illnesses.

Hospitals and nursing homes must provide complex or chronically ill patients with access to information and counseling about Palliative Care services, including pain and symptom management. Patient and staff education should be amended to meet this requirement.

The information and counseling must be "appropriate" to the patient, meaning it must be consistent with applicable legal, health and professional standards, as well as addressing the patient's individual circumstances and reasonably known wishes and beliefs.

Clinicians are encouraged to engage with their local licensed Hospice provider to assist with these interdisciplinary conversations about resources and holistic support, including advance care planning.

Though facility and community clinicians must "provide access" to information and counseling to those who might benefit from palliative care, patients/residents have the right to accept or decline the offer. The offer and the patient's response should be documented in the medical record. The clinician should repeat the offer, as appropriate, consistent with changes in condition and treatment options available. Questions regarding access to Palliative Care can also be included in intake or admission documents. Communication with the patient's attending clinician is also important to make sure all members of the care team are informed , regardless of the setting in which they practice.

It is important to recognize that patient needs and desire for information may change over time, especially as prognosis changes and/or becomes more complex. Palliative care information and counseling should be offered as often as necessary to ensure that the patient can make informed decisions when there is a change in condition, promoting patient control and optimizing quality of life.

Clinicians should document in the patient's medical record:

• Who offered palliative care information and counseling;
• 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 patient will access the chosen services, directly or by referral, including the clinician to which the patient was referred, if any.

When the patient lacks capacity to make medical decisions, clinicians must adopt policies that address at least 1) identifying the person who is legally authorized to make medical decisions for the patient and 2) providing access to information and counseling to that person.

For more information:

• Medical Orders for Life-Sustaining Treatment
• Advance Care Planning

In home care settings, the patient's attending clinician, not the home care agency or program, is responsible for discussing diagnosis, prognosis, and options for Palliative Care. The home care agencies and Long-Term Home Health Care Programs (LTHHCPs) must have policies and procedures for the sharing of Palliative Care information and counseling and a process for referrals.

To provide access to Palliative Care information and counseling, certified or licensed home health agencies and long-term home health programs should:

• Include Palliative Care options in the assessment of any patient with an advanced, life-limiting condition or illness;
• Ensure the care plan is based on a professional assessment that includes consideration of Palliative Care support for patients with advanced, life-limiting conditions;
• Monitor the patient's condition and alert the patient's attending clinician of any significant changes that might indicate a need for a palliative care evaluation;
• Notify the patient's attending clinician of any request by the patient (or the patient's authorized medical decision-maker, if the patient lacks capacity) for information about Palliative Care; and
• Document all assessments, counseling, and referrals in the patient's medical record and plan of care.

If not already included in educational content, community-based programs and agencies should consider expanding their patient and staff education and clinical protocols or pathways to promote Palliative Care information, triggers for counseling and referrals, as well as service options available. Messaging should take a proactive approach to reduce disease burden and improve quality of life via this temporary or long-term layer of added support to manage pain and symptoms holistically for the patient and family.

In enhanced assisted living residences (EALRs) and special needs assisted living residences (SNALRs), the resident's attending clinician, 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 communicated to residents with chronic or complex illness, as well as facilitation of referrals.

Enhanced assisted living residences (EALRs) and special needs assisted livingresidences (SNALRs) identify the needs of each resident through coordination with the resident's medical providers. To assist in that effort, enhanced assisted living residences (EALRs) and special needs assisted living residences (SNALRs) are required to include screening questions in the medical evaluation form about whether the resident might benefit from Palliative Care. If a potential need for Palliative Care is identified, this need must be included in the resident's individualized service plan, and the enhanced assisted living residence (EALR) or special needs assisted living residence (SNALR) must coordinate communication and referral options. In addition, staff should notify the resident's attending clinician of changes in the resident's condition and any requests from the resident or their family for a Palliative Care consult to manage pain and/or symptoms.

Enhanced assisted living residences (EALRs) and special needs assisted living residences (SNALRs) should consider whether their resident and staff education programs and clinical protocols or pathways should be amended to promote explanation of Palliative Care support services and how to access them.

Facility-based or community-based clinicians must "facilitate access" to Palliative Care by providing these supportive pain and symptom management services directly and/or by collaborating with specialized Palliative Care providers often available as a service line of the local licensed Hospice provider in the county in which the patient lives.

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 their 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 certifications.

Certain national boards offer certifications/credentialing in palliative care, including 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.

It is understood that Palliative Care can be provided as a "generalist" level or at a "specialist" level. Providers need not directly provide specialist-level Palliative Care 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 basic elements of Palliative Care, including assessment, advance care planning, pain and symptom management, a heightened attention to communication with the patient and their family, coordination among providers, relief of illness burden, and supporting the patient's goals of care. If the providers don't have specialists in-house, they should establish relationships with specialists in their community, which can often be attained through a contract with the locally licensed Hospice provider.

No, all the named entities, including small or rural facilities and community-based agencies, must comply with Public Health Law §2997-d. However, the Department of Health will take into consideration the following factors 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
• Facility size.

Every county in New York State has a licensed Hospice provider. Many of these organizations offer a Palliative Care service line and/or can provide specialty consultation for a facility that does not have in-house staff.

Palliative Care offers a holistic approach to pain and symptom management for chronic or complex illnesses, as well as transitional care post-surgery or post-procedure. It can be short-term or long-term in nature, with patients discharging the service when they regain strength or improve their prognosis.

Anyone of any age facing a new, complicated diagnosis could benefit from the interdisciplinary support of a Palliative Care team, to review medications, offer emotional and psychosocial support, promote conversations about Advance Care Planning, and manage pain and other symptoms to encourage quality of life. Palliative Care support often applies to the patient's inner circle of family or loved ones, offering resources for everyone involved in the patient's care.

For patients with a terminal illness or prognosis of a year or less, Palliative Care often provides a bridge between curative, aggressive treatment and the Hospice benefit. When Palliative specialists join the patient's healthcare journey earlier in their prognosis, build trust, assist with Advance Care Planning, and slowly transition the care plan and all its components toward end-of-life options instead of curative ones, patients and families experience peace of mind and control of their choices, as opposed to making decisions in a time of crisis in a setting not of their choosing.

For patients in a hospital or rehabilitation setting, a Palliative Care assessment should be conducted on admission, when the patient's/resident's condition changes, and upon discharge. If a patient's prognosis is terminal with a trajectory of six months or less at a time of admission or discharge, the facility should engage with the local licensed Hospice provider to offer this option to the patient/family, as well. Similar to the flexibility of a Palliative Care consultation, patients can revoke or discharge themselves from the Hospice benefit if they change their minds about curative treatment or if their prognoses improve. Neither Palliative Care nor Hospice is a life sentence.

Anyone on the care team, including the patient or their loved one, may identify the change in condition and potential need for a discussion about Palliative Care. However, some facilities require a clinician order to formally request a consultation. Social workers and spiritual care experts are often skilled at planning for discussions that assist in identifying wishes and goals, including Palliative Care needs.

At a minimum, facilities and agencies should 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 a licensed Hospice provider 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. Furthermore, many of the Hospice providers also offer a variety of Palliative Care services in a variety of settings. This might provide a tiered or transitional approach for the patient and family to build comfort and adjust to the emotional and psychosocial dynamics of the prognosis, adapting the care plan over time toward end-of-life options as they are ready. In other cases, the patient might be sick enough to warrant the Hospice benefit because of the progression of their diagnosis. In this case, facilities and agencies should make a concerted effort to counsel the patient and family about the importance of this added layer of comfort and expertise the licensed Hospice providers can offer when end-of-life may be weeks or days away. Close coordination and partnerships with specialized Palliative Care and Hospice providers are valuable in achieving the continuity of Palliative Care throughout the full course of an illness and across the continuum of care settings.