What is palliative care

Palliative care refers to the supportive care of patients with serious illnesses, as well as the supportive care that is available for family members. Palliative care is also called comfort care, supportive care, and symptom management. Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. The goal of palliative care is to help people with serious illnesses feel better and to improve their quality of life. Palliative care prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.

Palliative care is a central part of treatment for serious or life-threatening illnesses. Palliative care works together with the primary treatment you’re receiving. The goal is to prevent and ease suffering and improve your quality of life.

Palliative care can be given at the same time as treatments meant to cure or treat the disease. Palliative care may be given when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life.

Palliative care does not necessarily mean end of life or hospice care, although palliative care may be offered as part of these, too.

If you think you need palliative care, ask for it now. Tell your health care provider that you’d like to add palliative care to your treatment and ask to meet with the palliative care team or ask for a referral for palliative care.

To find services, talk to your health care provider or a representative from your local hospital. You also can research local palliative care services through the National Hospice and Palliative Care Organization online (https://www.nhpco.org/).

If you want to find palliative care in your area, go to (https://getpalliativecare.org) to search by state and city.

Palliative care is almost always covered by health insurance, including Medicare or Medicaid. If you do not have health insurance, talk to a social worker or the hospital’s financial counselor.

Palliative care provides relief from distressing symptoms including:

• Pain
• Shortness of breath
• Fatigue (tiredness)
• Constipation
• Nausea
• Loss of appetite
• Problems with sleep
• Breathing problems
• Weight loss
• Depression and anxiety
• Confusion
• Vomiting

Palliative care can also help you deal with the side effects of the medical treatments you’re receiving.

Palliative care may be offered for people with illnesses, such as:

• ALS (amyotrophic lateral sclerosis)
• Alzheimer’s Disease
• Breast Cancer
• Bone Marrow Transplant
• Cancer
• Chronic Obstructive Pulmonary Disease (COPD)
• Colon Cancer
• Congestive Heart Failure
• Dementia
• Eosinophil Associated Disease (EAD)
• Head and Neck Cancer
• Heart disease
• HIV/AIDS
• Huntington’s Disease
• Kidney Disease
• Kidney failure
• Leukemia and Lymphoma
• Liver disease
• Lung Cancer
• Lung diseases
• Multiple Myeloma
• Multiple Sclerosis
• Ovarian Cancer
• Pancreatic Cancer
• Parkinson’s Disease
• Prostate Cancer
• Pulmonary Fibrosis
• Sickle Cell Anemia
• Stroke

While receiving palliative care, people can remain under the care of their regular healthcare provider and still receive treatment for their disease.

Palliative care strives to provide you with:

• Expert treatment of pain and other symptoms so you can get the best relief possible.
• Open discussion about treatment choices, including treatment for your disease and management of your symptoms.
• Coordination of your care with all of your health care providers.
• Emotional support for you and your family.

Researchers have studied the positive effects palliative care has on patients and their families. Recent studies show that patients who receive palliative care report improvement in:

• Pain, nausea, and shortness of breath.
•  Communication with their health care providers and family members.
• Emotional support.

Other studies also show that starting palliative care early in the course of an illness:

• Ensures that care is more in line with patients’ wishes.
• Decreases stress and increases confidence in making decisions surrounding a loved one’s care.
• Meets the emotional and spiritual needs of patients and their families.

If I need palliative care, does that mean I’m dying?

The purpose of palliative care is to address your symptoms such as pain, breathing difficulties, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep, and many other symptoms. Receiving palliative care does not necessarily mean you’re dying.

Palliative care gives you a chance to live your life more comfortably.

Palliative care can also help you deal with the side effects of the medical treatments you’re receiving. Perhaps most important, palliative care can help improve your quality of life and provide help to your family as well.

How do I know if I need palliative care?

Many adults and children living with serious illnesses such as cancer, heart disease, lung disease, kidney failure, multiple sclerosis, AIDS, and cystic fibrosis, among others, experience physical symptoms and emotional distress related to their diseases. Sometimes these symptoms are due to the medical treatments they are receiving.

You may want to consider palliative care if you or your loved one:

• Suffers from pain or other symptoms due to ANY serious illness.
• Has physical or emotional pain that is NOT under control.
• Needs help understanding their illness and discussing treatment.

Start palliative care as soon as you find out that you have a serious illness.

It’s never too early to start palliative care. In fact, palliative care occurs at the same time as all other treatments for your illness and does not depend upon the course of your disease. There is no reason to wait. Palliative care teams understand that pain and other symptoms affect your quality of life and can leave you lacking the energy or motivation to pursue the things you enjoy. They also know that the stress of what you’re going through can have a big impact on your family. And they can assist you and your loved ones as you cope with the experience of living with a serious illness.

To find services, talk to your health care provider or a representative from your local hospital. You also can research local palliative care services through the National Hospice and Palliative Care Organization online (https://www.nhpco.org/).

If you want to find palliative care in your area, go to (https://getpalliativecare.org) to search by state and city.

How do I get palliative care?

Ask for it! You have to start by talking with your doctor or nurse.

Where is palliative care provided?

Palliative care is available in a number of places. Palliative care can be provided in the hospital, at outpatient clinics, or at home. More and more, palliative care is available outside of the hospital in the places where you live.

The process begins when either your health care provider refers you to the palliative care team or you ask your health care provider for a referral. Palliative care is provided by a team of professionals, including medical and nursing specialists, social workers, pharmacists, nutritionists, religious or spiritual advisors, and others.

You, your doctor and the palliative care team can discuss outpatient palliative care or palliative care at home. Some hospitals also offer outpatient palliative care even if you have not been in the hospital. Check with your doctor. These include hospitals, outpatient clinics and at home.

What is palliative care at home?

Palliative care that is provided in your home.

Who gives Palliative Care?

Palliative care involves working together as a team. Any health care provider can give palliative care. But some healthcare providers specialize in it. Palliative care may be given by:

• A team of doctors
• Nurses and nurse practitioners
• Physician assistants
• Registered dietitians
• Social workers
• Psychologists
• Massage therapists
• Chaplains

Palliative care may be offered by hospitals, home care agencies, cancer centers, and long-term care facilities. Your provider or hospital can give you the names of palliative care specialists near you.

Patients who may want palliative care often wonder how it will affect their relationships with their current health care providers. Some of their questions include:

• Will I have to give up my primary health care provider?
• Who do I ask for palliative care?
• Will I offend my health care provider if I ask questions?

Most important, you do NOT give up your own health care provider to get palliative care. The palliative care team and your health care provider work together. Most clinicians appreciate the extra time and information the palliative care team provides to their patients. You may have to ask your health care provider for a referral to get palliative care services. Tell your health care provider you are thinking about palliative care and ask how to access palliative care in your area.

What does the palliative care team do?

Palliative care is specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness. It is provided by a specially-trained team of doctors, nurses and other specialists who work together with your other doctors to provide an extra layer of support. The goal is to improve your quality of life.

To do this, the palliative care team will:

• Relieve your symptoms and distress
• Help you better understand your disease and diagnosis
• Help clarify your treatment goals and options
• Understand and support your ability to cope with your illness
• Assist you with making medical decision
• Coordinate with your other doctors

Who pays for palliative care?

Most insurance plans cover at least part of the palliative care services, just as they would other medical services. Medicare and Medicaid also typically cover palliative care. If you have concerns about the cost of palliative care, a social worker, care manager, or financial advisor at your hospital or clinic can help you.

How does palliative care address pain?

If you have an illness causing you pain that is not relieved by drugs such as acetaminophen or ibuprofen, the palliative care team may recommend trying stronger medicines.

As always, if you have concerns about taking medications, talk to your palliative care team. They can tell you about how various medications work, what their side effects are, and how to get the most effective pain relief.

How do I know if palliative care is right for me?

Palliative care may be right for you if you have a serious illness. Serious illnesses include but are not limited to: cancer, heart disease, lung disease, kidney disease, Alzheimer’s, amyotrophic lateral sclerosis (ALS) and many more. Palliative care is appropriate at any stage of a serious illness. You can also have this type of care at the same time as treatment meant to cure you.

How does palliative care help me choose the best treatment option?

The palliative care team will also spend time talking and listening to you and your family. They will make sure you completely understand all of your treatment options and choices. By deeply exploring your personal goals, the palliative care team will help you match those goals to the options. They will also make sure that all of your doctors are coordinated and know and understand what you want. This gives you more control over your care.

When should I ask for palliative care?

You can have it at any age and any stage of an illness, but early in your illness is recommended.

Recent cancer guidelines ¹ say that cancer patients should receive palliative care early and together with their other treatments. People who are newly diagnosed with advanced cancer should receive a palliative care consult within 8 weeks of their diagnosis.

What can I expect from palliative care?

In short, you can expect that your quality of life will be improved. You will have relief from symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. You can also expect close communication and more control over your care.

Palliative care will help you carry on with daily life. It will improve your ability to go through medical treatments. And it will help you to match your goals to your treatment choices.

Do I have to give up my own doctor?

No. The palliative care team provides an extra layer of support and works in partnership with your primary doctor.

Can I have curative treatment together with palliative care?

Yes, absolutely. Your treatment choices are up to you. You can have palliative care at the same time as treatment meant to cure you.

What does Palliative Care include?

A serious illness affects more than just your body. It touches all areas of a person’s life, as well as lives of that person’s family members. Palliative care can address these effects of a person’s illness.

Physical problems. Symptoms or side effects include:

• Pain
• Trouble sleeping
• Shortness of breath
• Loss of appetite, and feeling sick to the stomach
• Fatigue (tiredness)
• Constipation
• Nausea
• Loss of appetite
• Problems with sleep
• Breathing problems
• Weight loss
• Depression and anxiety
• Confusion
• Vomiting

Treatments may include:

• Medicine
• Nutritional guidance
• Physical therapy
• Occupational therapy
• Integrative therapies

Emotional, social, and coping problems. Patients and their families face stress during illness that can lead to fear, anxiety, hopelessness, or depression. Family members may take on care giving, even if they also have jobs and other duties.

Emotional and coping

Palliative care specialists can guide patients and families to the kind of help they need to deal with the emotions that come with cancer and its treatment. Depression, anxiety, and fear are only a few of the concerns that can be addressed in this way. Experts may offer counseling, find support groups, hold family meetings, or refer to mental health therapists.

Social and financial

Cancer patients may have financial and legal worries, insurance questions, job concerns, and questions about advance directives. For many people, the technical language and fine details of laws and legal forms are hard to understand. To ease the burden, the palliative care team may help coordinate the needed services. For example, the team may direct patients and families to resources that can help with financial counseling. The team may know where to get help with medical forms or legal advice. They may also help find local and national resources, such as those that can help with transportation or housing.

Treatments may include:

• Counseling
• Support groups
• Family meetings
• Referrals to mental health providers

Practical problems

Some of the problems brought on by illness are practical, such as money- or job-related problems, insurance questions, and legal issues. A palliative care team may:

• Explain complex medical forms or help families understand treatment choices
• Provide or refer families to financial counseling
• Help connect you to resources for transportation or housing

Spiritual issues

When people are challenged by illness, they may look for meaning or question their faith. A palliative care team may help patients and families explore their beliefs and values so they can move toward acceptance and peace.

Palliative care vs Hospice care

Hospice care is care at the end of life, always includes palliative care. Hospice care is most often offered only when the person is expected to live 6 months or less. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.

Both palliative care and hospice care provide comfort. Palliative care is available to you at any time during your illness. Palliative care can begin at diagnosis, and at the same time as treatment. You may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.

Remember that you can receive palliative care at the same time you receive other treatments for your illness. Its availability does not depend upon whether your condition can be cured. The goal is to make you as comfortable as possible and improve your quality of life.

Table 1. Palliative care vs hospice care

Question	Palliative Care	Hospice Care
What is the focus?	Palliative care focuses on the pain, symptoms and stress of serious illness. Most people receive this along with other care they may be receiving. Palliative care is not time-limited. Most people receive these services as an added layer of support. Palliative care is not hospice care.	Hospice care also focuses on the pain, symptoms and stress of serious illness. Hospice care is provided to people with a serious illness who may have 6 months or less to live if the disease runs its normal course. A team provides this care. This team is made up of doctors, nurses, social workers, chaplains, hospice aides, volunteers and others who give care to meet the patient’s and their family’s needs.
Who can receive this care?	Any person with a serious illness, no matter how long they have to live	Any person with a serious illness with months not years to live.
Can I continue to receive treatments to cure my illness?	Yes	Not usually but check with your doctor
What services are provided?	Manage pain and symptoms, in-person or telephone visits, help with treatment options, advance care planning to honor your wishes, and referrals to community resources.	Manage pain and symptoms with 24-hour on-call service, in-person visits, medical equipment, related drugs, crisis and respite care, volunteers, spiritual care, grief and counseling support, and referrals to community resources.
Where do services take place?	Palliative care may be provided in any place. Your home Hospice facility Skilled Nursing Facility Long-term Care Facility Long Term Acute Care Facility Assisted Living Facility Hospital Group Home Clinics	Hospice care may be provided in most places. Your home Hospice facility Skilled Nursing Facility Long-term Care Facility Assisted Living Facility Hospital Group Home
Who provides these services?	Most palliative care services are provided by doctors, nurse practitioners or nurses with support from social workers and chaplains. The palliative care team works with your doctor and other specialists.	A team provides hospice care. The team includes doctors, nurses, social workers, chaplains, hospice aides, volunteers, and others. Care is given to the person and their family.
What agencies may provide these services?	Palliative Care Practices Home Health Agencies Hospices Nursing Facilities Healthcare Clinics Hospitals	Hospices Veteran Affairs Hospice
How long can I receive care?	You can have palliative care as needed and care can increase over time as you get sicker. Care will depend upon your needs, and the plan you have through Medicare, Medicaid, or private insurance.	As long as you meet your health insurance requirements for hospice care. Hospice is usually provided for months, not years.
Does Medicare pay?	Yes. Palliative care may be covered through Medicare Part B. Some treatments and drugs may not be covered. May be subject to a co-pay.	Yes. The Medicare Hospice Benefit pays the costs of care related to the serious illness. There may be drugs, services and/or equipment that are not covered.
Does Medicaid pay?	Yes. Palliative care may be covered through Medicaid. Some treatments and drugs may not be covered. May be subject to a co-pay.	Yes. In most states Medicaid pays the costs of care related to the serious illness. There may be drugs, services and/or equipment that are not covered.
Does private insurance pay?	Most health plans cover palliative care. Each plan is different.  You should check with your insurance plan. Some treatments and drugs may not be covered. May be subject to a co-pay.	Most health plans have a hospice benefit that pays the costs of care related to the serious illness. There may be some drugs, services and/or equipment that are not covered.

[Source ² ]

What does the hospice 6-month requirement mean?

Some people misinterpret their doctors’ suggestion to consider hospice. They think it means death is very near. But, that’s not always the case. Sometimes, people don’t begin hospice care soon enough to take full advantage of the help it offers. Perhaps they wait too long to begin hospice; they are too close to death. Or, some people are not eligible for hospice care soon enough to receive its full benefit.

In the United States, people enrolled in Medicare can receive hospice care if their healthcare provider thinks they have less than 6 months to live should the disease take its usual course. Doctors have a hard time predicting how long an older, sick person will live. Health often declines slowly, and some people might need a lot of help with daily living for more than 6 months before they die.

Talk to the doctor if you think a hospice program might be helpful. If he or she agrees, but thinks it is too soon for Medicare to cover the services, then you can investigate how to pay for the services that are needed.

What happens if someone under hospice care lives longer than 6 months? If the doctor continues to certify that that person is still close to dying, Medicare can continue to pay for hospice services. It is also possible to leave hospice care for a while and then later return if the healthcare provider still believes that the patient has less than 6 months to live.

Palliative care in cancer

Palliative care refers to the supportive care of patients with serious illnesses, as well as the supportive care that is available for family members. Palliative care is also called comfort care, supportive care, and symptom management. Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. The goal of palliative care is to help people with serious illnesses feel better and to improve their quality of life. Palliative care prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.

Palliative care is a central part of treatment for serious or life-threatening illnesses. Palliative care works together with the primary treatment you’re receiving. The goal is to prevent and ease suffering and improve your quality of life.

Palliative care provides relief from distressing symptoms including:

• Pain
• Shortness of breath
• Fatigue (tiredness)
• Constipation
• Nausea
• Loss of appetite
• Problems with sleep
• Breathing problems
• Weight loss
• Depression and anxiety
• Confusion
• Vomiting

Many of these symptoms can be relieved with medicines. Some other methods may help, such as nutrition, physical therapy, or deep breathing techniques. Also, chemotherapy, radiation therapy, or surgery may be used to shrink tumors that cause pain and other problems. Even though these methods are most often used to cure cancer, they’re sometimes used to make people more comfortable.

Spiritual. When a person has cancer, patients and families often look more deeply for meaning in their lives. Some find the disease brings them deeper faith. Others may question their faith as they struggle to understand why cancer happened to them. Palliative care can offer help to explore beliefs and values so that a person can find a sense of peace or reach a point of acceptance.

Palliative care does not necessarily mean end of life or hospice care, although palliative care may be offered as part of these, too.

If you think you need palliative care, ask for it now. Tell your health care provider that you’d like to add palliative care to your treatment and ask to meet with the palliative care team or ask for a referral for palliative care.

If you want to find palliative care in your area, go to (https://getpalliativecare.org) to search by state and city.

At one time, people thought of palliative care as the kind of care that was offered when nothing else could be done to treat or cure the cancer. But cancer care providers have always worked to relieve symptoms as part of cancer treatment. It’s now recognized that palliative care is an important part of cancer care at all
stages.

Palliative care should start at diagnosis and be used during treatment and followup care, at any time it’s needed. If the cancer is not cured, palliative care is also used near the end of life. Family members may also be helped by palliative care.

Choosing Palliative Care in Cancer

Palliative care is given along with treatment for cancer. But when a patient reaches the point when treatment for the cancer is no longer working, palliative care becomes the main focus of care. It will continue to be given to help relieve the symptoms and emotional issues of cancer. Palliative care providers can help ease the transition to end‐of‐life care.

In many cases, advanced cancer happens after the person has had cancer for some time and treatment is no longer working. But for some people the cancer may already be advanced when they first find out they have it. In any case, symptoms such as pain and depression can almost always be treated.

It may be hard to think and talk about this. Everyone with cancer hopes that their cancer will be cured, but this is not always possible. When it becomes clear that there is nothing else that can be done to help a person live longer, the cancer care team can begin to make some predictions about end of life. Keep in mind that these are only educated guesses; no one can ever know for sure how long a person will live. Some people can live for years with advanced cancer.

Someone may still get cancer treatment, but the goal may no longer be to cure the cancer. At this time the purpose of care is often to control symptoms caused by the cancer so they can enjoy life and feel as good as they can. When symptoms get worse, the focus of care is to make the person comfortable.

Some people think that if cancer is in many parts of the body it is the same as advanced cancer. This is not always true. Usually when health care providers speak of advanced cancer, they are talking about cancers that cannot be cured. A person can have widespread cancer, but it can still be treatable and sometimes curable. Examples of this are testicular cancer, leukemias, and many lymphomas. In other cases, widespread cancer may not be curable.

On the other hand, cancer may not have spread to distant places but still be considered advanced. This may be because there is too much cancer to be removed, or it has caused major health problems. An example of this is pancreatic cancer. Or, some cancers that start in the brain are considered advanced because they cannot be cured. They can be life‐threatening even if they don’t spread.

Can a family member receive palliative care?

Family members and loved ones are an important part of cancer care. Like the patient, they have a number of changing needs. It’s common for family members to be overwhelmed by the extra responsibilities placed upon them. Many find it hard to care for a loved one who is ill. They still have other obligations, such as work and caring for other family members. Other issues can add to this stress. A family member may feel unsure about how to help their loved one with medical problems and emotions such as worry and fear. There may not be enough social support for the patient or the family. These challenges can compromise the health of those who are trying to help. Palliative care can help families and friends cope with these issues and give them the support they need.

Pediatric palliative care

Pediatric palliative care provides physical, emotional, and spiritual support to sick children and their families. Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. Pediatric palliative care relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety and depression. In short, it helps the child and the family improve their quality of life. A medical care team — including doctors, pain management specialists, nurses, social workers, and therapists — helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with these serious illnesses.

Pediatric palliative care is family-centered. It helps with communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family.

A specially-trained team of doctors, nurses, social workers and others provide palliative care. The team works together with the child’s other doctors as an extra layer of support. Palliative care is appropriate at any age and at any stage of an illness, and it can be provided along with treatment meant to cure.

Pediatric palliative care is based on need, not prognosis. It is best to start palliative care as early as possible. This benefits both the child and the family.

Pediatric palliative care is not to be confused with end-of-life care or hospice care, which provides care for patients who are not expected to recover. The goal of palliative care is to enhance the quality of life for a child and family during a serious illness and to help families make important decisions about their child’s care.

Any child who has a serious, complex, or life-threatening condition — whether he or she is expected to make a full recovery, live with a lifelong chronic illness, or die from the condition — may be a candidate for palliative care.

Palliative care is helpful for children coping with diseases like cancer; neurological conditions; and heart, lung, kidney, or liver disease.

What services are offered in pediatric palliative care?

Pediatric palliative care is designed to meet the unique needs of each child and family. Families can tailor their child’s care, and get as much or as little help as they want.

Members of the palliative care team take the time to get to know both your child and your family. Because every child and family has individual needs, you may meet and work with different members of the team at different times.

One of the team’s main goals is to make sure that everyone considers the family’s situation and how to make their journey a bit easier. This may include symptom management, communication, and family support.

The palliative care teams might include:

• Palliative care doctors who provide direct medical care and manage the treatment of physical symptoms, such as pain, nausea, tiredness, shortness of breath, and trouble sleeping. The palliative care doctor is a palliative care specialist who also has training in pediatrics. In addition to palliative care, he/she may have another area of specialty within pediatrics (such as neonatology or oncology). The doctor’s role is to offer insight into the management of symptoms (such as pain, trouble breathing and nausea), and to guide the team in understanding the medical aspects of the child’s condition.
• Nurses who assess the complex needs of the patient and family, facilitate communication with the care team and within the family, and coordinate care among the care team. Palliative care nurse practitioners are skilled in guiding families through the complex situations of hospitalization and care at home.
• Social workers who offer counseling, help families manage the health care system, and provide information about and referrals to other resources
• Child life specialists who address developmental needs, help children understand their condition and participate in decision-making when appropriate, and help maintain a sense of normalcy. Child life specialists help children understand their illness. They use play, dialogue, art, music writing exercises and other approaches. Often they become the child’s “safe harbor” and closest source of support. In addition, child life therapists help brothers and sisters process their own experience of having an ill sibling.
• Physical therapists and occupational therapists who help children feel more comfortable and teach them how to best use their physical abilities
• Art and music therapists who help children explore and express feelings through music, art, poetry, and other creative outlets
• Chaplains and other spiritual advisors who provide support and counseling related to spiritual beliefs; they can also provide grief counseling
• Massage therapists who promote relaxation, help patients and families manage stress, and provide pain relief
• Dietitians who set up healthy meal plans and offer guidelines for nutritious eating
• Home health care aides who help patients transition from hospital care to home care and assist with home care needs

Generally, each hospital has its own type of palliative care team. Some teams even include community volunteers who want to help in any way they can.

Who pays for pediatric palliative care?

Most health insurance plans cover all or part of palliative care, and many palliative care services are supported by charitable donations. If the cost of palliative care is a concern, a social worker might be able to help provide guidance on covering the cost.

Benefits of pediatric palliative care

Pediatric palliative care can help any child suffering from a serious illness. Pediatric palliative care specialists focus on your whole child and how your child’s illness and treatment affect the entire family.

The palliative care team supports your child and family every step of the way. They do this by controlling symptoms, by helping you clarify your goals and matching them to your treatment options, and more.

Working together with your primary doctor, the palliative care team provides an extra layer of support through:

• Expert treatment of symptoms, including stress
• Communication and guidance for difficult and complex treatment choices
• Close communication and coordination with all other doctors and medical teams
• Support for the family and the siblings

It is important to remember that blending palliative care with curative treatment is essential for providing your child and family with the most complete medical care possible.

Where your child can get pediatric palliative care

Families often first meet the pediatric palliative care team at the hospital or clinic appointment. Follow-up visits can also take place in either of these locations. However, many teams will continue to offer care and support via telephone and home visits once the child is at home.

The home environment can be the most comforting and safest place for a child facing a serious illness. Palliative care at home is often supported with the help of a home nursing agency, a community care agency and the child’s primary physician. Some pediatric palliative care teams even offer families 24/7 access so that they can call day or night with questions.

Is palliative care right for my child?

Deciding whether or not your child needs palliative care is a personal decision that can only be made after you’ve spoken to your health care provider, considered your child’s and your family’s individual needs, and determined what services are available in your area.

To find services, talk to your health care provider or a representative from your local hospital. You also can research local palliative care services through the National Hospice and Palliative Care Organization online (https://www.nhpco.org/).

The main goal of pediatric palliative care is to allow your child to grow and develop through childhood in the face of serious illness.

Pediatric palliative care teams help your child and family caregivers cope with the challenges of illness and hospitalizations by relieving the symptoms of the disease or the side effects of treatments.

The palliative care team also focuses on supporting the people around your child, including siblings. They provide you and your child’s other medical teams with resources for medical care at home or closer to home. They also coordinate care among your child’s many doctors and improve communication between you and the primary medical team.

Pediatric palliative care teams manage common symptoms, such as pain, shortness of breath, depression, anxiety, nausea, spasticity and seizures. They explain ways to care for children in unique circumstances, including those who need fetal and neonatal care or suffer from chronic illnesses. They also offer practical advice about making difficult medical decisions and about caring for children outside the hospital and in the community.

A pediatric palliative care team helps whenever and wherever needed, whether in the hospital, at home or in the community. How palliative care can help often depends on how your child is feeling. That’s why having access twenty-four hours a day, seven days a week to a team that knows your child is key.

How pediatric palliative care helps parents and other loved ones

Pediatric palliative care recognizes that many people are affected by a child’s illness, especially parents, siblings and other family members. This also includes extended family, classmates and friends. Providing support for anyone in a sick child’s life is an important part of palliative care.

The team approach of palliative care addresses different needs and priorities and can be flexible as needs change. Some family members may benefit from referrals to individual or family counseling. Some siblings may receive support through pediatric therapies such as Child Life programs, art or music.

Many parents struggle with how to talk to their children about illness. Many siblings struggle as well. The palliative care team can provide guidance, resources and connections with appropriate resources for anyone involved in a child’s life, including the school and community.

For parents in particular, dealing with the complex medical system can be a difficult and troubling task. Many seriously ill children have many medical providers taking care of them, and receive treatment in more than one location. This can add to parents feeling overwhelmed and confused by the amount of information they are given.

Parents also struggle with making the “right” choice for their child and family. These decisions can range from practical issues—like whether to send a child to school during medical treatments—to more complicated ones about which medical treatments to try. By spending time getting to know the patient and family, the pediatric palliative care team can help them make decisions that are in line with their goals and values.

How can I help my child?

If your child would benefit from a palliative care program, remember that those services can help you too. Family members caring for seriously ill children face many challenges, and palliative care programs can help with some of these.

Parents and other caregivers also play an important role in a child’s health. You know your child better than anyone else, so you’re a partner with the palliative care team. You all have the same goal — providing the best care for your child.

Pediatric vs. Adult Palliative Care

People who care for ill children know that their needs are very different from those of adult patients. As anyone who works in pediatrics knows, children are not simply little adults.

Children experience a variety of complex illnesses that are not seen in adults. Even illnesses that are seen in adults can act differently in children because of their unique anatomy and physiology. Children are also growing and developing as they go through an illness. Therefore, all specialized medical care, including palliative care, must be tailored to meet the needs of infants, children and adolescents.

Palliative care can be helpful to all people living with a serious illness and at any stage of their disease. This is particularly the case in children, because they are resilient in illness in ways that adults are not.

Similarities include:

• Palliative care can start at the beginning of an illness and be given along with treatment meant to cure.
• Palliative care aims to improve quality of life by relieving distressing symptoms.
• The team helps with decision making and figuring out care goals.
• Palliative care is medical care but it also involves a team of different disciplines that includes doctors, nurses, social workers and others.

Differences include:

• Having a serious illness is not a “normal” condition for most children. This presents unique challenges in caring for the children and their families.
• Medical decisions for young children are usually made by their family caregivers. Adult patients may make their own decisions.
• Pediatric palliative care can also involve a play therapist, child life therapist and/or child behavioral specialist.

How is palliative care different from hospice care?

Many people confuse palliative care with end-of-life care, or hospice care. Hospice care and palliative care programs share a similar goal of providing symptom relief and pain management. But they’re not the same:

• Palliative care can happen at any time during a person’s illness, from diagnosis on. It does not depend on prognosis (a patient’s outcome) and can be given along with life-prolonging or curative care. Palliative care can be provided in hospitals, outpatient settings, and at home.
• Hospice care is a specific type of palliative care. It focuses on providing care to patients who are not expected to recover. It is intended for people who are no longer getting treatment for their medical condition and who are expected to live for 6 months or less. Hospice care may be provided at home, in the hospital, or in a hospice facility.

Palliative care guidelines

The World Health Organization (WHO) describes palliative care as services designed to prevent and relieve suffering for patients and families facing life-threatening illness, through early management of pain and other physical, psychosocial, and spiritual problems ³. Growing recognition of palliative care as an integral aspect of cancer treatment, with the ability to improve quality of life and prevent unnecessary hospital admissions and the use of health services, especially when instituted early in the course of disease, has prompted the development of a range of guidelines concerning palliative cancer care ⁴.

The American Society for Clinical Oncology (ASCO) recommends considering the combination of palliative care with standard oncology care early in the course of treatment for patients with metastatic cancer and/or a high symptom burden ⁵. Specific recommendations are as follows:

• The time to start palliative care is as soon as a patient’s cancer becomes advanced
• For newly diagnosed patients with advanced cancer, the Expert Panel suggests early palliative care involvement within 8 weeks after diagnosis
• Inpatients and outpatients with advanced cancer should receive dedicated palliative care services early in the disease course concurrent with active treatment.

According to ASCO, essential components of palliative care may include the following ⁵:

• Building rapport and relationships with patients and family caregivers
• Managing symptoms, distress, and functional status (eg, pain, dyspnea, fatigue, sleep disturbance, mood, nausea, constipation)
• Exploration of understanding and education about illness and prognosis
• Clarification of treatment goals
• Assessment and support of coping needs (eg, provision of dignity therapy)
• Assistance with medical decision making
• Coordination with other care providers
• Provision of referrals to other care providers as indicated

The American Society for Clinical Oncology (ASCO) recommendations on delivery of palliative care are as follows ⁵:

• For patients with cancer who have high symptom burden and/or unmet physical or psychosocial needs, outpatient cancer care programs should provide and use dedicated resources (palliative care clinicians) to deliver palliative care services to complement existing program tools.
• For patients with early or advanced cancer who will be receiving care from family caregivers in the outpatient setting, providers (eg, nurses, social workers) may initiate caregiver-tailored palliative care support, which could include telephone coaching, education, referrals, and face-to-face meetings.
• Telephone support may be offered for family caregivers who may live in rural areas or are unable to travel to the clinic.

The National Comprehensive Cancer Network (NCCN) concurs and includes the following additional recommendations ⁶:

• All cancer patients should be repeatedly screened for palliative care needs, beginning with their initial diagnosis and thereafter at intervals as clinically indicated
• Palliative care should be initiated by the primary oncology team and then augmented by collaboration with palliative care experts
• All health care professionals should receive education and training to develop palliative care knowledge, skills, and attitudes
• An interdisciplinary team of palliative care specialists should be available to provide consultation or direct care to patients and/or families as requested or needed
• Quality of palliative care should be monitored by institutional quality improvement programs

The National Comprehensive Cancer Network (NCCN) recommends assessment by the oncology team for patients whose screening confirms the presence of one or more of the following ⁶:

• Uncontrolled symptoms
• Moderate-to-severe distress related to cancer diagnosis and cancer therapy
• Serious comorbid physical, psychiatric, and psychosocial conditions
• Patient, family, or caregiver concerns about the course of disease and decision-making
• Patient/family requests for palliative care
• Metastatic solid tumors and refractory hematologic malignancies
• Potentially life-limiting disease

Additional indicators may include the following:

• Poor performance status – Eastern Cooperative Oncology Group (ECOG) score ≥3 or Karnofsky Performance Status (KPS) score ≤50
• Persistent hypercalcemia
• Brain or cerebrospinal fluid metastasis
• Delirium
• Malignant bowel obstruction
• Superior vena cava syndrome
• Spinal cord compression
• Cachexia
• Malignant effusions
• Palliative stenting or venting gastrostomy

Cancer Pain

National Comprehensive Cancer Network (NCCN) guidelines identify general principles of pain management and provide specific recommendations for assessment, management, and reassessment of cancer pain in adults. Major recommendations include the following ⁷:

• Consider interventions in the context of patient-specific goals for comfort, function, and safety
• Patients with an acute pain crisis may be candidates for hospital admission to achieve goals for comfort and function
• Identify pain related to an oncologic emergency
• For pain not related to an oncologic emergency, discriminate opioid-tolerant patients from opioid-naïve patients (ie, those with versus those without long-term exposure to opioids)

Assessment

Assessment recommendations are as follows:

• All patients should be screened for pain at every contact
• Pain intensity must be quantified and documented and the quality characterized by the patient, whenever possible
• Include patient reporting of breakthrough pain, treatments used and their impact on pain; patient reporting of adequate comfort; patient reporting of satisfaction with pain relief; provider assessment of impact on function; and any special issues for the patient relevant to pain treatment
• Comprehensive pain assessment for persisting pain or new pain should be performed to determine the etiology, pathophysiology, specific cancer pain syndrome, and patient goals for comfort and function

Management

Cancer pain management guidelines from the European Society for Medical Oncology (ESMO) follow the WHO strategy of a sequential three-step analgesic ladder from non-opioids to weak opioids to strong opioids, gauged to pain intensity ⁸. The European Society for Medical Oncology (ESMO) recommendations for choice of analgesics according to pain severity are as follows:

• Mild – Acetaminophen (paracetamol) and/or a nonsteroidal anti-inflammatory drug (NSAID); those agents are also effective as adjuncts for treating more severe pain, at least in the short term and unless contraindicated
• Mild to moderate – Weak opioids such as codeine, tramadol, and dihydrocodeine, in combination with non-opioid analgesics
• Moderate to severe – Oral morphine

The European Society for Medical Oncology (ESMO) guidelines note that although oral administration is advocated, patients presenting with severe pain that needs urgent relief should be treated and titrated with parenteral opioids, usually subcutaneous or intravenous ⁸.

The European Society for Medical Oncology (ESMO) recommendations regarding alternative strong opioids include the following:

• Oral hydromorphone or oxycodone (immediate-release and modified-release) and oral methadone are effective alternatives to oral morphine; however, methadone should be initiated by physicians with experience and expertise in its use
• Transdermal fentanyl and transdermal buprenorphine are best reserved for patients whose opioid requirements are stable, and are usually the treatment of choice for patients who are unable to swallow, have poor tolerance of morphine or poor compliance
• Buprenorphine has a role in the analgesic therapy of patients with renal impairment and undergoing hemodialysis treatment
• Opioid switching to improve pain relief and/or drug tolerability is not supported by high-quality evidence but is frequently used in clinical practice; it requires requires familiarity with equianalgesic doses of the different opioids

For pain related to an oncologic emergency, such as bone fracture, infection, or obstruction, the NCCN recommends treating the pain directly in addition to providing specific treatment for the underlying condition (e.g., surgery, steroids, radiation therapy, antibiotics). For pain not related to an oncologic emergency, NCCN recommendations vary according to whether the patient is opioid naïve or opioid tolerant. The U.S. Food and Drug Administration (FDA) defines opioid tolerance as receiving, for 1 week or longer, one of the following ⁹:

• 60 mg oral morphine/day
• 25 mcg transdermal fentanyl/hour
• 30 mg oral oxycodone/day
• 8 mg oral hydromorphone/day
• 25 mg oral oxymorphone/day
• An equianalgesic dose of another opioid

For opioid-naïve patients, the NCCN recommends the following non–oncologic emergency pain management ⁷:

• Provide psychosocial support, including education of the patient and family
• Reevaluate at each contact
• Consider adjuvant analgesics for specific pain syndromes
• Optimize integrative interventions
• Provide a prophylactic bowel regimen for patients receiving opioid analgesics
• Severe pain: rapidly titrate a short-acting opioid
• Moderate pain: titrate a short-acting opioid
• Mild pain: Consider nonsteroidal anti-inflammatory drugs (NSAIDs) or acetaminophen or slower titration of a short-acting opioid

For opioid-tolerant patients who have breakthrough pain of intensity ≥4 (on a scale of 0-10) or whose goals of pain control and function are not met, management is as follows ⁷:

• Administer a rescue dose of a short-acting opioid, equivalent to 10-20% of the total long-acting or regularly schedule oral opioid dose taken in the previous 24 hours
• Assess efficacy and adverse effects every 60 minutes for oral opioids and every 15 minutes for IV opioids
• If pain assessment is unchanged or increased, increase the rescue dose by 50-100%
• If the pain score decreases, repeat the opioid dose and reassess at 60 minutes for oral opioids and 15 minutes for IV opioids
• If the pain score remains unchanged after two to three cycles, consider changing the route of administration from oral to IV or explore alternative management strategies
• If the pain score decreases to 0-3, give the current effective dose as needed over 24 hours before proceeding to subsequent management strategies
• Ongoing need for repeated rescue doses may indicate a need for adjustment of the regularly scheduled opioid dose
• Consider rapidly acting transmucosal fentanyl for brief episodes of incident pain not attributed to inadequate dosing of around-the-clock opioid

Subsequent management is based on the continued pain rating score and includes the following:

• Regular doses of opioids, with rescue doses as needed
• Management of constipation
• Social support and education for patients and families

For ongoing care, if an acceptable level of comfort and function has been achieved and the patient’s 24-hour opioid requirement is stable, convert to an extended-release oral medication (if feasible) or other extended-release formulation (e.g., transdermal fentanyl).

In 2012 the European Association for Palliative Care (EAPC) updated its guidelines for the use of opioid analgesics to treat cancer pain and provided the following recommendations ¹⁰:

• For mild to moderate pain not controlled by NSAIDs, a step 2 oral opioid (codeine or tramadol) may be added; a step 3 opioid (e.g., morphine or oxycodone) may also be considered
• There is no preference among oral morphine, oxycodone, or hydromorphone as first-choice step 3 opioids for moderate to severe pain
• Transdermal fentanyl and buprenorphine are alternatives to oral opioids for patients unable to swallow
• Patients experiencing inadequate relief and severe adverse effects with a step 3 opioid may benefit from switching to an alternative opioid
• Subcutaneous delivery is the preferred alternative for patients unable to receive opioids orally or transdermally; IV infusion should be considered when subcutaneous administration is contraindicated; IV infusion is preferred for opioid titration when rapid pain control is needed

Dyspnea

The NCCN guidelines for treatment of dyspnea in cancer patients are based on estimates of the patient’s life expectancy ⁶. For patients with a life expectancy of years to months to weeks, the NCCN recommends assessment of symptom intensity followed by treatment of underlying causes or comorbid conditions with measures such as the following:

• Chemotherapy and/or radiation therapy
• Procedure to reduce or remove cardiac, pleural or abdominal fluid
• Bronchoscopic therapy
• Bronchodilators, diuretics, steroids, antibiotics, or transfusions
• Anticoagulants for pulmonary emboli

For symptomatic relief, the following interventions may be used, as appropriate:

• Oxygen therapy for hypoxia
• Educational, psychosocial, and emotional support for patients and family
• Nonpharmacologic therapies including fans, cooler temperatures, stress management, relaxation therapy, and comfort measures
• If the patient is opioid naïve, morphine; if dyspnea is not relieved by morphine and is associated with anxiety, add benzodiazepines
• Noninvasive positive-pressure ventilation (ie, continuous positive airway pressure [CPAP], biphasic positive airway pressure [BiPAP]) if clinically indicated for a severe reversible condition

For patients with a life expectancy of weeks to days, the following measures may be used, in addition to the interventions listed above:

• When assessing symptom intensity, use physical signs of distress as potential indications of dyspnea in noncommunicative patients
• Withhold, withdraw, or initiate a time-limited trial of mechanical ventilation as indicated by patient and family preferences, prognosis, and reversibility
• Provide sedation as needed
• Provide guidance for patient and family regarding dying and respiratory failure
• Provide emotional and spiritual support

If fluid overload is a contributing factor, interventions include the following:

• Decrease/discontinue enteral or parenteral fluid
• Consider low-dose diuretics
• If opioid naïve, morphine
• Benzodiazepines
• Scopolamine to reduce excessive secretions

The only treatment for dyspnea recommended in the Oncology Nursing Society (ONS) guidelines is parenteral or oral immediate-release opioids. For patients with a life expectancy of years to months to weeks, the Oncology Nursing Society deemed the following interventions “likely to be effective“ ¹¹:

• Temporary ventilator support for severe, reversible conditions
• Oxygen therapy
• Benzodiazepines for anxiety
• Increasing ambient airflow directed at the face or nose
• Providing cooler temperatures
• Promoting relaxation and stress reduction
• Providing educational, emotional, and psychosocial support for patients and family caregivers, and referring to other disciplines as appropriate

For patients with a life expectancy of weeks to days, the Oncology Nursing Society recommendations are as follows:

• Reduce excessive secretions with scopolamine, hyoscyamine, or atropine
• Implement oxygen therapy, if the patient reports subjective relief with it
• Institute sedation as needed
• Discontinue fluid support; consider low‐dose diuretics if fluid overload may be a contributing factor

Anorexia and Cachexia

Guidelines for the management of anorexia/cachexia in patients with advanced cancer have been issued by the NCCN and the European Palliative Care Research Collaborative (EPCRC).

The NCCN guidelines are based on estimates of the patient’s life expectancy. For patients with a life expectancy of years to months, the recommendations are as follows:

• Evaluate the severity of weight loss
• Treat reversible causes – Early satiety; symptoms that interfere with food intake (e.g., depression, pain, constipation, nausea/vomiting, fatigue, dyspnea)
• Modify medications that interfere with intake
• Consider possible endocrine disorders – Hypogonadism, thyroid dysfunction, metabolic abnormalities (e.g., increased calcium)
• Consider appetite stimulant – Megestrol acetate (should be used with caution due to increased risk of blood clots, edema; death occurs in one of every 23 patients, prednisone
• Consider exercise program
• Consider consultation with a nutritionist
• Consider enteral and parenteral feeding as appropriate

For patients with a life expectancy of months to weeks to days, the NCCN recommends first determining the importance of the symptoms to patient and family; if considered important, the anorexia/cachexia can be treated with megestrol acetate. Further recommendations are as follows:

• Focus should be on patient goals and preferences
• Provide emotional support
• Treat depression, if appropriate
• Provide education and support to patient and family regarding the emotional aspects of withdrawal of nutritional support

Finally, inform the patient and family of the natural history of advanced cancer, including the following:

• Absence of hunger and thirst is normal
• Nutritional support may not be metabolized
• There are risks associated with artificial nutrition and hydration, including fluid overload, infection, and hastened death
• Symptoms such as dry mouth can be treated with local measures (eg, mouth care, small amounts of liquids)
• Withholding or withdrawal of enteral or parenteral nutrition is ethically permissible; it will not exacerbate symptoms and may improve some symptoms

The European Palliative Care Research Collaborative (EPCRC) guidelines focus on refractory cachexia in patients with advanced cancer, which it defines as “a stage where reversal of weight loss is no longer possible due to very advanced or rapidly progressive cancer unresponsive to anti-cancer therapy.” The recommendations in the guidelines are aimed at alleviating the consequences and complications of cachexia and eating-related distress of patients and families and include the following ¹²:

• Educate patient and family to minimize eating-related distress; counsel them about weight loss–related distress and end-of-life issues
• Enteral nutrition therapy may be partially effective for selected patient groups
• The burden of parenteral nutrition will outweigh any benefits in the majority of patients
• The use of thalidomide is not recommended
• The use of cannabinoids is not recommended
• Progestins should be considered for patients with anorexia as a major distressing symptom
• Steroids may be given for short periods (at most 2 weeks); longer duration may increase the burden on the patient from side effects and may cause a deterioration in muscle strength

Distress Management

The NCCN guidelines for distress management include recommendations for ongoing screening, monitoring, documentation, and treatment of distress throughout all stages of cancer treatment ¹³. Screening for distress using the Distress Thermometer and Problem Checklist should be conducted at the initial visit and at other appropriate intervals, especially with changes in disease status (ie, remission, recurrence, or disease progression).

Treatment is determined on the basis of the level and source(s) of distress identified. Clear roles are delineated for members of the primary oncology team as well as for psychosocial oncology professionals who deliver mental health services, social work and counseling services, and chaplaincy services ⁸.

In 2014, ASCO released evidence-based guidelines for managing depression and anxiety in patients with cancer ¹⁴. These guidelines were adapted from the 2010 Pan-Canadian Practice Guideline: Screening, Assessment and Care of Psychosocial Distress (Depression, Anxiety) in Adults with Cancer, which was developed as a synthesis of five practice guidelines, including the NCCN guidelines for stress management ¹⁵.

The ASCO guidelines identify separate processes for screening, assessment, and treatment of depression and anxiety in adults with cancer. Timing of evaluation, types of assessment tools, and specific treatment pathways are recommended depending on the levels of symptoms reported. Recommendations for follow-up and ongoing re-assessment are also provided ¹⁴.

Palliative Sedation

In 2009, the European Association of Palliative Care (EAPC) published guidelines to address the key clinical issues surrounding palliative sedation. The recommendations in the guidelines are intended to be modified to reflect local culture; legal considerations; and specific needs of the home, hospital, or hospice-based setting. The recommendations include the following ¹⁶:

• Sedation can be considered for patients with intolerable distress due to physical symptoms and a lack of other methods of palliation
• Continuous deep sedation should be considered only in the very terminal stages of illness with expected death within hours to days at most
• Evaluation should be performed by a clinician with expertise in palliative care; whenever possible, evaluation should be multidisciplinary
• Assessment should include estimates at to whether death is anticipated within minutes to hours, hours to days, days to weeks, or longer, and evaluation of the patient’s capacity to make decisions about ongoing care; if decisional capacity is in doubt, evaluation by a psychiatrist may be required
• For patients with decisional capacity, the aims, benefits, and risks of the proposed sedation should be discussed with the patient and preferably with participation of family members
• For patients lacking capacity to decide, and without advance directives, permission should be obtained from a legally recognized proxy
• In actively dying patients who have no advanced directive or health care proxy and are in severe distress, comfort measures, including the use of sedation if necessary, is the standard of care
• If the family members are not participants in the decision process, permission should be sought to inform them of the decision
• The level of sedation should be the lowest level necessary to provide relief of suffering
  Intermittent or mild sedation should be attempted first

The presence of refractory psychological symptoms does not necessarily indicate a far advanced state of physiological deterioration; sedation should be reserved for patients in advanced stages of terminal disease under the following circumstances:

• Symptoms should be designated as refractory only after repeated assessment by clinicians with psychological treatment expertise who have established a relationship with the patient and family and have attempted routine approaches for anxiety, depression, and existential distress
• Evaluation should be conducted by a multidisciplinary team that includes psychiatrists, chaplains, ethicists, and persons providing direct care for the patient
• In the rare cases where sedation is appropriate, sedation should be delivered on a respite basis for 6-24 hours with planned downward titration
• Continuous sedation should be considered only after repeated trials of respite sedation with intensive intermittent therapy

The 2014 European Society of Medical Oncology (ESMO) guidelines for use of palliative sedation in advanced-stage cancer are derived from the European Association of Palliative Care (EAPC) guidelines and contain no major variances in the recommendations ¹⁷.

NCCN guidelines for palliative sedation are also in general agreement with EAPC. Additional specific recommendations include the following ⁴:

• Palliative sedation is best performed by palliative care experts
• The patient must have refractory symptoms that cannot be controlled despite aggressive palliative care that does not compromise consciousness, and death is anticipated within hours to days as confirmed by two physicians
• Reassignment of health care providers who cannot provide sedation due to personal or professional beliefs as long as patient care can safely be transferred to another health care professional
• Maintain current pain and symptom management interventions
• Monitor patient symptoms and titrate sedatives and other medications to maintain a level of sedation that relieves the patient’s refractory symptoms
• Provide ongoing psychosocial and spiritual support for the patient’s family and health care providers.

References

1. ASCO Guideline Upgrade Integrates Palliative Care in Standard Oncology Care. https://www.ajmc.com/journals/evidence-based-oncology/2016/december-2016/asco-guideline-upgrade-integrates-palliative-care-in-standard-oncology-care#sthash.T4OACXGq.dpuf
2. Palliative Care Questions and Answers. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3355
3. Palliative Care Fact sheet N°402. World Health Organization. https://www.who.int/en/news-room/fact-sheets/detail/palliative-care
4. Greer JA, Jackson VA, Meier DE, Temel JS. Early integration of palliative care services with standard oncology care for patients with advanced cancer. CA Cancer J Clin. 2013 Sep. 63 (5):349-63.
5. [Guideline] Ferrell BR, Temel JS, Temin S, Alesi ER, Balboni TA, Basch EM, et al. Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol. 2017 Jan. 35 (1):96-112.
6. [Guideline] NCCN Clinical Practice Guidelines in Oncology. Palliative Care. National Comprehensive Cancer Network.
7. [Guideline] NCCN Clinical Practice Guidelines in Oncology. Adult Cancer Pain. National Comprehensive Cancer Network.
8. [Guideline] Ripamonti CI, Santini D, Maranzano E, Berti M, Roila F, ESMO Guidelines Working Group. Management of cancer pain: ESMO Clinical Practice Guidelines. Ann Oncol. 2012 Oct. 23 Suppl 7:vii139-54.
9. Extended-Release (ER) and Long-Acting (LA) Opioid Analgesics Risk Evaluation and Mitigation Strategy (REM). U.S. Food and Drug Administration. https://www.fda.gov/downloads/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/UCM311290.pdf
10. [Guideline] Caraceni A, Hanks G, Kaasa S, Bennett MI, Brunelli C, et al. Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC. Lancet Oncol. 2012 Feb. 13 (2):e58-68.
11. [Guideline] DiSalvo WM, Joyce MM, Tyson LB, Culkin AE, Mackay K. Putting evidence into practice: evidence-based interventions for cancer-related dyspnea. Clin J Oncol Nurs. 2008 Apr. 12 (2):341-52.
12. [Guideline] Clinical practice guidelines on cancer cachexia in advanced cancer patients. European Palliative Care Research Collaborative. http://www.cancercachexia.com/literature-watch/43_clinical-practice-guidelines-on-cancer-cachexia-in-advanced-cancer
13. [Guideline] NCCN Clinical Practice Guidelines in Oncology. Distress Management. National Comprehensive Cancer Network.
14. [Guideline] Andersen BL, DeRubeis RJ, Berman BS, Gruman J, Champion VL, Massie MJ, et al. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014 May 20. 32 (15):1605-19.
15. [Guideline] Howell D, et al. A Pan-Canadian Practice Guideline: Screening, Assessment and Care of Psychosocial Distress (Depression, Anxiety). Canadian Association of Psychosocial Oncology. https://www.capo.ca/
16. [Guideline] Cherny NI, Radbruch L, Board of the European Association for Palliative Care. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 2009 Oct. 23 (7):581-93.
17. [Guideline] Cherny NI, ESMO Guidelines Working Group. ESMO Clinical Practice Guidelines for the management of refractory symptoms at the end of life and the use of palliative sedation. Ann Oncol. 2014 Sep. 25 Suppl 3:iii143-52.