Questions and Answers - Recent questions and answers in Palliative Care

What is palliative care?

Sat, 01 Feb 2020 11:54:53 +0000

Answered: How might children react sometimes to heavy conversations about their life-threatening condition?

Sat, 01 Feb 2020 11:52:04 +0000

Children can feel insecure during heavy or serious conversation. They may want to get back to normal as soon as possible. This may mean returning quickly to the game they were playing or the TV show they were watching. This doesn't mean the child didn't hear or understand. Parents can join the child in the activity in order to be there when questions arise.

Answered: What should parents know about their baby's life-threatening condition?

Sat, 01 Feb 2020 11:41:50 +0000

Parents should learn everything they can about their baby's condition after they've had time to process their emotions.

One thing parents need to understand about the diagnosis is that doctors can only provide an average life expectancy -- and no individual is exactly average. Parents can sometimes be just as distressed if a baby surpasses his life expectancy as they would be if he didn't reach it. This distress is caused in part when they don't know what to do with their child if he lives longer than expected. For this reason, contingency plans should always be in place.

Answered: How can clinical depression be treated?

Sat, 01 Feb 2020 11:41:04 +0000

The most effective treatments usually combine short-term psychotherapy with antidepressant medications as needed.

Answered: If your child has a life-threatening condition and you're not sure how to talk to them about it, is there a medical professional who can help you?

Sat, 01 Feb 2020 11:40:33 +0000

A palliative care professional can help you explain as much as you want your child to know about their condition.

Answered: Who should you talk to if you or your loved one has clinical depression and a life-threatening illness?

Sat, 01 Feb 2020 11:34:46 +0000

It's important to talk with your doctor or someone else on your care team about them. Get immediate medical help if you or a loved one is having thoughts of suicide.

Clinical depression in someone who is dying can be treated.

Answered: Should you tell a child about a life-threatening illness?

Sat, 01 Feb 2020 11:31:29 +0000

Yes. Even a 3- or 4-year-old child is old enough to know in simple terms what's happening. Talking death creates the opportunity for closure -- both for the child and the person who is dying. When talking to a young child, it's important to not give too much information. And what you do say should always be age appropriate.

Answered: What are other signs of death?

Sat, 01 Feb 2020 11:30:21 +0000

Breathing trouble can be distressing for family members, but often it isn't painful and can be managed. Pain can be treated, too. But your loved one may have a hard time taking medicine by mouth. Hallucinations and visions, especially of long-gone loved ones, can be comforting. If seeing and talking to someone who isn't there makes the person who's dying happier, you don't need to try to convince them that they aren't real. It may upset them and make them argue and fight with you.

Answered: What are the signs one to three months before death?

Sat, 01 Feb 2020 11:29:31 +0000

One to three months before death, your loved one is likely to:

Sleep or doze more
Eat and drink less
Withdraw from people and stop doing things they used to enjoy
Talk less (but if they're a child, more)

Answered: What should you do in the last days or hours of death of your loved one?

Sat, 01 Feb 2020 11:27:29 +0000

In the last days or hours, your loved one may become restless and confused and have hallucinations so upsetting they may cry out, strike out, or try to climb out of bed. Stay with them. Try to keep them calm with soothing music and gentle touch. Sometimes medication helps. The room should be well lit, but not bright. Make it as quiet and peaceful as possible. Constantly assure them that you're there. Ironically, a loved one may also become clear-headed in their final hours.

Answered: When should you switch to hospice care for your loved one?

Sat, 01 Feb 2020 11:26:05 +0000

When your loved one's health care team recognizes that he or she is likely within six months of dying, they may recommend switching to hospice, a more specialized care for people with a terminal illness who are expected to die. Your loved one will still get treatment for pain relief and comfort, but hospice also offers emotional and spiritual support for them as well as you and close family.

Answered: Where can you get help and support when your loved one is dying?

Sat, 01 Feb 2020 11:24:38 +0000

Caregivers, families, and friends of someone who is dying can turn to:

Family Caregiver Alliance
Hospice Foundation of America
National Caregivers Library
National Hospice and Palliative Care Organization

Answered: What are the signs of death within days or hours?

Sat, 01 Feb 2020 11:22:53 +0000

When death is within days or hours, your loved one may:

You may notice their:

If they're not already unconscious, your loved one may drift in and out. But they probably can still hear and feel.

Not want food or drink
Stop urinating and having bowel movements
Grimace, groan, or scowl from pain

Eyes tear or glaze over
Pulse and heartbeat are irregular or hard to feel or hear
Body temperature drops
Skin on their knees, feet, and hands turns a mottled bluish-purple (often in the last 24 hours)
Breathing is interrupted by gasping and slows until it stops entirely

Answered: How do 3- to 5-year olds understand a sick or dying sibling?

Sat, 01 Feb 2020 11:21:04 +0000

They don't understand the difference between fantasy and reality, so they may believe death is temporary or reversible.

They are also ego-centric and may think the death of a sibling is punishment for something they did.

Answered: What can palliative medicines help with?

Sat, 01 Feb 2020 11:20:08 +0000

Its focus is not to treat or cure your disease, but to ease your symptoms and any side effects of treatment. These include:

Pain
Shortness of breath
Fatigue
Anxiety or depression
Sleep problems
Lack of appetite
Constipation

Answered: What can parents say if they don't want to use the words "die, dead", and "dying" with their sick child?

Sat, 01 Feb 2020 11:19:12 +0000

If parents cannot say these words, a palliative care professional can help explain as much as the parents want their children to know.

Answered: How do 10- to 12-year-olds understand death?

Sat, 01 Feb 2020 11:18:24 +0000

They may know that death is final and will happen to everyone including themselves.

They understand that their own death or the death of a sibling will cause sadness in others. A sick child at this age may say he has to hold on for his parents' sake.

They will respond more like adults with anger, sadness, and fear.

They will have increasingly more specific questions about the illness and about death.

Answered: Who is on a palliative care team?

Sat, 01 Feb 2020 11:17:00 +0000

In general, the team includes a doctor, a nurse, and a social worker. But other experts often fill out the team, according to a patient's needs. These include chaplains, counselors, pharmacists, dietitians, rehabilitation specialists, physical therapists, music and art therapists, and home health aides.

Answered: Why is it important to create memories if you feel grief as a primary caregiver?

Sat, 01 Feb 2020 11:16:26 +0000

Spend time together. It may be something as simple as an afternoon in the park or playing a board game. These activities will strengthen the bond you have, and they'll be something to hold on to after your loved one is gone.

Share memories of past good times, too. If you feel up to it, go through photo albums together or watch home movies.

Answered: Are there resources to start the conversation with a child about their life-threatening condition?

Sat, 01 Feb 2020 11:15:42 +0000

Social workers and child life specialists recommend a number of resources -- such as story and activity books -- that may help break the ice and help explain difficult concepts. Professionals also encourage parents to use children's questions as opportunities to start a conversation.

Answered: What should I discuss with my medical power of attorney?

Sat, 01 Feb 2020 11:14:41 +0000

Here are some possibilities you may want to discuss:

How do you feel about being fed or hydrated through a tube?
Would you want to receive certain treatments, like antibiotics, tube feeding, or mechanical ventilation, for a trial period and have them stopped if a certain time passed with no improvement?
How aggressive do you want your doctors to be about the use of CPR should your heart stop?
What are you most afraid of regarding treatments you might receive?
What are you afraid might happen if you can't make decisions for yourself?
Are there circumstances under which you would want more aggressive measures taken to sustain your life, and others under which you wouldn't?

Answered: How do you pay for palliative care?

Sat, 01 Feb 2020 11:13:46 +0000

Most insurance plans cover palliative care treatment in full or partially. Typically, Medicare and Medicaid also cover palliative care. If you're concerned about costs, speak to a social worker from the palliative care team.

Answered: What might happen if parents avoid a child's questions about death if the child has a life-threatening illness?

Sat, 01 Feb 2020 11:12:50 +0000

The child may ask someone else or hold the questions in, which could make them anxious. That's why it's a good idea to acknowledge rather than disregard their questions. It can build trust.

Answered: How might siblings of a child with a life-threatening condition react?

Sat, 01 Feb 2020 11:12:08 +0000

When a child is dying, many parents want the siblings to be at the child's bedside with the rest of the family. Child life specialists will help facilitate this, but they advise parents that siblings may want to leave the room quickly and return to what they were doing before. Parents should understand that this behavior is normal.

Answered: What happens if your doctor is hesitating to make a referral for palliative care?

Sat, 01 Feb 2020 11:08:34 +0000

Most doctors welcome the services that a palliative care team provides to their patients. However, on rare occasions, a primary care doctor might hesitate to make a referral. If you encounter this problem, ask your doctor for an explanation. You can also ask the palliative care team to help you explain why you would like such services. Then you can speak with your primary care doctor about how palliative care could benefit you.

Answered: When is palliative care needed for an unborn baby or a newborn?

Sat, 01 Feb 2020 11:06:08 +0000

When a baby in the womb or a newborn is diagnosed with a life-threatening condition, palliative care may be recommended.

Answered: What services can a palliative care team provide?

Sat, 01 Feb 2020 11:04:43 +0000

Expert treatment of pain and other symptoms
Open discussion about treatment choices for your illness (including difficult and complex choices) and management of your symptoms
Coordination of your care with all of your health care providers
Help with navigating the health care system
Help with making a smooth transition from the hospital to home care or a nursing home
Emotional, spiritual, and practical support for you and your family

Answered: What are side effects of drugs taken for pain during palliative or hospice care?

Sat, 01 Feb 2020 11:03:35 +0000

These drugs do have side effects such as drowsiness, nausea, and constipation. Those problems usually fade as your body gets used to the medication. Your doctor should be able to help you decide whether to start taking them and how much you need.

Answered: What causes bone pain and how can it be treated?

Sat, 01 Feb 2020 11:01:50 +0000

There are many causes for bone pain, including cancer metastases and compression of bones in the spine from degenerative bone disease. It can also be caused by damage from long-term use of steroids to treat a condition.

Using anti-inflammatory adjuvants -- even something as simple as ibuprofen, or something stronger such as a corticosteroid -- can lessen bone pain.

Answered: How can a palliative care team help you and your child with emotions?

Sat, 01 Feb 2020 10:59:37 +0000

The team can help you and your child with the emotions that go along with a serious illness. It can help you wade through the important health care decisions you’ll have to make for your child, too.

Answered: What are tips to help a 6- to 9-year-old sibling cope with their feelings about a sick or dying child?

Sat, 01 Feb 2020 10:47:23 +0000

Use visual aids they can understand. Child life specialists have used marshmallows to explain tumor growth or described leukemia as a thickening of the blood.

Make specific references to organs like heart and lungs.

Make clear that death is not like the images in cartoons.

Make clear to siblings that what happened to a brother or sister doesn't happen to everyone.

Answered: What do you do if there is not a pediatric palliative care team available at your child's hospital?

Sat, 01 Feb 2020 10:46:25 +0000

If pediatric palliative care is not available at your child's hospital, primary caregivers can perform some palliative tasks. Families may ask their primary doctor if it is possible to be referred to an outside facility for palliative care services.

Answered: What are tips to help a 10- to 12-year-old sibling cope with their feelings about a sick or dying child?

Sat, 01 Feb 2020 10:45:51 +0000

Find opportunities for constructive venting of feelings, such as sibling groups at hospitals and art or play therapies.

Provide as much specific, factual information as possible.

Keep siblings in regular routines as much as possible. It may not seem like long, but professionals advise that children under age 12 not miss more than a week of school after a sibling has died. Each child has unique needs, though

Answered: Who should get palliative care?

Sat, 01 Feb 2020 10:32:48 +0000

You don’t have to be dying or have a terminal illness to get palliative care. You can start it as soon as you’re diagnosed. If you get your symptoms under control early, you may be better able to get through the whole treatment.

Answered: What are the goals of palliative care?

Sat, 01 Feb 2020 10:31:58 +0000

The goals are:

Relieve pain and other symptoms
Address your emotional and spiritual concerns, and those of your caregivers
Coordinate your care
Improve your quality of life during your illness

Answered: When is palliative care recommended for newborns?

Sat, 01 Feb 2020 10:31:16 +0000

Palliative care is recommended for newborns who:

Are born at extremely low birth weight (i.e. a pound or less)
Are born before 23 weeks of gestation
Are born with a lethal abnormality or malformation
Will experience more burden than benefit from further treatments for their condition

Answered: How do you know what palliative medications to use?

Sat, 01 Feb 2020 10:30:24 +0000

Your palliative care experts will ask what you may need and want. Maybe you’d like to feel well enough to leave the hospital or to move to the next step in your treatment. Or, you may want to get stronger so you can see your daughter play baseball or attend your son’s wedding. Your team can help you reach those goals.

The team can answer questions about treatment options, help you make decisions, and let your regular doctors know your wishes. You’ll have more control over your overall care this way.

Answered: What are the different types of life support?

Sat, 01 Feb 2020 10:29:21 +0000

When most people talk about a person being on life support, they're usually talking about a ventilator, which is a machine that helps someone breathe. A ventilator (or respirator) keeps oxygen flowing throughout the body by pushing air into the lungs. It's used temporarily for conditions like pneumonia, but it may be needed longer for someone with lung failure.

One end of a tube goes into the windpipe through the nose or mouth. The other end attaches to the electric pump. Some people get medicine to make them more comfortable and sleepy while on a breathing machine.

When a person's heart stops, doctors will try to restart it. These life support methods include CPR, which keeps blood and oxygen flowing throughout the body, electric shocks (called defibrillation) to get the heart beating again, and medication to help the heart work.

Answered: How do I get palliative care?

Sat, 01 Feb 2020 10:28:46 +0000

If you feel palliative medicine might help you, ask for it if it’s not offered. You can receive care at home, in the hospital, nursing home, or an assisted living center.

Answered: What diseases can be treated with palliative care?

Sat, 01 Feb 2020 10:28:15 +0000

Today, patients with cancer, heart disease, chronic lung disease, AIDS, Alzheimer's, multiple sclerosis, amyotrophic lateral sclerosis (ALS), and many other serious illnesses are eligible for palliative care.

Answered: What are things loved ones can do to help me with a life-threatening illness?

Sat, 01 Feb 2020 10:27:40 +0000

Many people will ask what they can do to help. If you know what that is, it's a good idea to tell them, or they will come up with their own ideas of how to help, which may or may not be what you need. You might want:

Someone to sit with you and hold your hand during times of day that are particularly tough for you
To talk a lot about your diagnosis and condition
To talk about anything but your diagnosis and condition
People to help you get out and participate in activities you enjoy
Friends to help you with mundane daily activities, or with caring for children or pets

Answered: What is the Center to Advance Palliative Care?

Sat, 01 Feb 2020 10:27:08 +0000

_{The center, based at the Mount Sinai School of Medicine in New York City, has a mission to increase availability of palliative care services. It operates a web site for patients and families called "getpalliativecare.org." This site provides general information on palliative care and links to news stories. It also offers patients' personal stories and links to resources for them and their caregivers. The resources range from financial and caregiver help to information about specific diseases.}

Answered: How can parents find support if their baby has a life threatening disease?

Sat, 01 Feb 2020 10:22:44 +0000

Many parents report finding great comfort in support groups and in continued contact with the hospital and staff.

There may be no greater loss than the loss of a child. Neonatal palliative caregivers help parents make the most of their child's life and support them through their grief.

Answered: What are resources for dementia caregivers?

Sat, 01 Feb 2020 10:21:49 +0000

There are many resources available to caregivers of a person diagnosed with dementia. The Alzheimer's Association (800-272-3900) will refer you to your local chapter for information, resources, and their hands-on caregiver training workshops.

Answered: What are non-drug options for easing pain due to an illness?

Sat, 01 Feb 2020 10:20:26 +0000

There are a number of non-drug tools for coping with pain. They can be used on their own or in combination with drug therapies. They include:

Massage
Relaxation techniques
Acupuncture
Physical therapy
Pet therapy
Gel packs

Answered: What do neonatal palliative care givers assist in?

Sat, 01 Feb 2020 10:19:07 +0000

Among measures palliative caregivers take to support the family in their grief are:

Connecting family with social workers, chaplains, grief counselors, and support groups
Educating family about the grief process
Connecting family with parents who've experienced a similar loss
Attending memorial services
Staying in touch with the family through cards and phone calls
Hosting annual memorials at the hospital

Answered: What are some questions to ask your palliative care team?

Sat, 01 Feb 2020 10:15:23 +0000

What can I expect from palliative care?
Where will I receive my care (for example, in the hospital, home, nursing home, or hospice?)
Who will be part of my palliative care team?
What are your recommendations for my care?
What will you do if I have severe pain or uncomfortable symptoms?
How will you communicate with my other doctors?
What decisions will my family or I need to make?
Will you be able to help explain the issues involved in making these decisions?
Will you communicate candidly about my illness with me and my family?

Answered: What wishes should parents consider if their unborn baby or newborn has a life-threatening disease?

Sat, 01 Feb 2020 10:13:49 +0000

This wish list may include taking family pictures, receiving visitors, and diapering and dressing the baby. Some parents express the desire to just have some time alone with their child. A palliative care team will do what is needed to honor the parents' wishes.

Doctors recommend that before the birth, couples discuss not just the baby's life-threatening illness but his life, as well. Parents have said that making plans helped them feel in control of their situation.

Answered: What does neonatal palliative care look like during delivery?

Sat, 01 Feb 2020 10:11:11 +0000

When a newborn is not expected to live long after birth - be it hours, days, or weeks - the birth plan may include limiting the number of people in the delivery room.

For a normal birth, there may be several health care professionals in the room. For a newborn with a short life expectancy, depending on what life-prolonging measures will be taken, the delivery may be attended only by the doctor. This helps to make the delivery as simple and intimate as possible and maximizes the time parents can spend alone with their child.

Answered: What are things to look for when choosing a medical power of attorney?

Sat, 01 Feb 2020 10:09:09 +0000

If you decide to choose a medical power of attorney, here are some things to look for:

Someone who is not intimidated by medical professionals and is willing to ask challenging questions
Someone who can put aside their own feelings about a particular procedure or medical option in order to ensure that your wishes are carried out
Someone who understands your wishes about medical options and end-of-life care