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If you or a loved one has just been diagnosed with a serious illness—like cancer, heart disease, dementia, ALS or others—palliative care can help you right away.
Palliative care is specialized medical care for people with serious illness. It provides relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care can work alongside your doctors to provide an extra layer of support, and you don’t have to wait to get it.
A recent study found that early palliative care improves quality of life, reduces depression and improves satisfaction with care. The study also found that palliative care may help prolong life.
While every person’s journey and experience with serious illness is different, there are common denominators. In his book Life After the Diagnosis, Dr. Steven Z. Pantilat, a renowned international expert in palliative care, shares innovative approaches for dealing with serious illness, outlines the steps that patients should take, and how they can better navigate the medical system. He makes sense of what doctors say, what they actually mean, and how to get the best information to help make the best medical decisions possible.
“It’s not about the decisions you make, but making sure that the decisions you do make are based on real evidence and real information,” says Dr. Pantilat.
The book covers everything from the first steps after diagnosis and finding the right caregiving and support, to planning your future so your loved ones don’t have to. Dr. Pantilat offers advice on how to tackle the most difficult treatment decisions and discussions and shows readers how to choose treatments that stay consistent with their values and personal goals. He also emphasizes that no matter where you are in your illness, there is always more to be discussed and planned.
“A diagnosis of serious illness can be incredibly frightening. It can be bewildering to think about how to move forward. The important message is that you can move forward to get really good care,” says Dr. Pantilat.
In this video, Dr. Pantilat explains how palliative can help you and your loved ones.
In our next post, we will give you five ways palliative care can help you at diagnosis.
If you have, or someone you love has, a serious illness, then you know how draining nausea can be. It makes you tired, uncomfortable and upset. Palliative care can help.
Palliative care is specialized medical care for people with serious illness. It will treat your nausea, your pain and other symptoms. It will help you understand your treatment options. It will help you cope with the day-to-day challenges of living with a serious illness. It will give you back some quality of life.
There are many possible causes for your nausea. Feeling sick can be a side effect of certain treatments, including pain medication, and it can also be a symptom of the disease itself. Nausea and vomiting are some of the most common symptoms for cancer patients, for example. It’s also a common problem for patients with heart disease and kidney failure, among others.
Please speak to your doctor about your nausea, and ask for palliative care. There are many ways that a palliative care team can help you to feel better. There are lots of medicines that can treat your nausea, even if you are having trouble keeping things down. What your doctor suggests will depend on the cause of your nausea. You may get some advice about your diet: having lots of small meals might help, for example. Some patients find acupuncture or acupressure helps too.
Try to keep track of when you feel most sick. What makes it worse and what makes it better? Do you feel worse when you move around? Do you have any other symptoms at the same time? Your palliative care doctor will spend as much time as needed to find the right treatment to make you feel better.
Talk to your doctor about your nausea. Palliative care can help.
If you or a loved one are living with a serious illness, you should know whether palliative care is right for you. The first step is typically through the doctor who treats your illness. But not all doctors are clear on the definition of palliative care.
Palliative care is specialized medical care for people with serious illness. It provides relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team who work together with your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in your illness. And it can be provided along with treatment that is meant to cure you.
Most doctors are trained to focus on the cure and treatment of the disease itself rather than on your quality of life issues. Palliative care is a relatively young medical specialty so it may not be on your doctor’s radar.
It’s important to know that the specially trained palliative care team works closely together with your primary doctor. They focus on the stress, other symptoms and side effects from your disease and its treatment.
Palliative care helps with pain, depression, anxiety, fatigue, shortness of breath, constipation, nausea, loss of appetite, difficulty sleeping and much, much more. The team will spend as much time as it takes speaking with you and your family about your goals, needs and treatment options.
Palliative care improves your ability to tolerate medical treatments. And it helps you have more control over your care by improving your understanding of your choices for treatment. So if your doctor is not talking to you about adding in a palliative care team, you or your caregivers should ask for it. See if palliative care is right for you. Click here for information you can bring to your doctor. Click here to find a palliative care provider.
If you have a serious illness, coping with pain can be a big part of your daily struggle. You are not alone. Many patients with serious illnesses such as cancer, heart disease or kidney failure have pain that isn’t properly treated. Palliative care can help.
Palliative care is specialized medical care for people with serious illnesses. It will help manage your pain and other symptoms using methods that most doctors are not aware of. You can get palliative care at the same time as treatment for your disease. Palliative care gives you and your doctors an added layer of support, so that you can live as well as possible without pain.
Some patients don’t want to talk about pain. You might not want to bother your doctor. Please speak up! Pain can make it harder for you to cope with your medical treatments. Pain can slow your recovery, and it can make you depressed. Research shows that good control of pain and other symptoms can help you live longer.
Your pain might be dull or sharp. You might have it all the time or only sometimes. Your palliative care team will talk to you about your pain so they can choose the right medicine and the right dose to make you feel better. It may help to keep track of your pain by writing down how strong it is, where it is on your body, what makes it worse and what makes it better.
Your doctor may suggest using stronger medicines such as morphine to manage your pain. These medicines are safe and they work. Some patients are scared of becoming addicted to pain medication. Your doctor will explain that the risk of addiction is very low for people using these medicines to treat pain.
You may be worried about side effects from pain medicines. This could include feeling sleepy, confusion and constipation. Different people respond differently, but your palliative care team will help you manage them. Once a steady amount of the medicine stays in your body, the side effects usually get better.
There is no reason to put up with pain that stops you living a good life. Talk to your doctor about palliative care.
Listen to Malcolm’s story. Before palliative care, he experienced so much pain that it became hard to focus on anything else. Palliative care helped him cope with pain, and get back to focusing on what matters most to him: spending time with loved ones.
When Amy Berman of New York City was diagnosed with stage 4 inflammatory breast cancer, she learned that only a small percentage of people with her diagnosis survive to five years. That was five-and-a-half years ago, and Amy is still here. In fact, she is as active and fulfilled as she has ever been. She credits palliative care with keeping her healthy and lively as she deals with her illness. This is a story about making difficult but informed decisions. This is a story about finding happiness in the moment. … read more
What is most important to you? It’s easy to forget the things you love about life when you have a serious illness.
Think about it for a moment. Do you love live music or salsa dancing? Do you feel happiest reading bedtime stories to your grandson? Or is your happy place enjoying a simple meal at home with your family?
Doctors are often too busy fighting your illness to stop and ask you what you want out of life, but your answer to that question is very important. Palliative care can help you live a good life, the way you choose to live it.
Palliative care is specialized medical care for people with serious illness. It gives you, your family and doctors an extra layer of support. It will treat your pain and other symptoms. It will help you understand your treatment options. And it will help you cope with the everyday challenges of living with a serious illness.
You can get palliative care at the same time as treatment for your disease, so that you can live as well as possible.
Palliative care team members can help you find relief from pain, shortness of breath and fatigue. They can treat constipation, nausea and loss of appetite. They can help you sleep and overcome depression. Managing these symptoms can give you the strength you need to carry on with your daily life. It can also help you cope with your medical treatments. And it can help you start enjoying life again.
Your palliative care team will include a doctor, a nurse and a social worker as well as other health care professionals. All will be specialists in palliative care. They will spend as much time as needed to understand your situation, learn about what is important to you and make a plan for your care.
Quality of life is important. You don’t have to wait until your symptoms become serious to ask for palliative care. In fact, the sooner you get palliative care, the better for you and your family.
If you have a serious illness, it’s very likely that you are suffering from fatigue. Fatigue is the feeling of being easily tired and unable to do everyday tasks. It is a feeling of general weakness. It is the feeling of being unable to focus and forgetting things. Fatigue is one of the most common symptoms for patients with serious illness. Palliative care can help.
Palliative care is specialized medical care for people with serious illness. It will treat your pain and other symptoms, including fatigue. It will help you understand your treatment options. It will help you cope with the day-to-day challenges of living with a serious illness.
There are many causes of fatigue for people with serious illness. It may be because of untreated pain or side effects from your medicines. You may be tired because of dehydration or infection. You could be depressed or worried. You may have a problem with the chemistry of your blood. It could have a different cause or multiple causes. .
If you feel tired, please speak up and ask for palliative care. Tell your doctor how tired you are and how fatigue affects your life. Palliative care teams are used to treating fatigue and can help you feel better.
Feeling tired all the time affects your quality of life. Don’t let it. Tell your doctor about your fatigue and start living well again. Palliative care can help.
If you are facing a serious illness and have asked for palliative care or were referred by your physician, you may be wondering what the first meeting will be like. Here are five things you can expect.
You will learn how the palliative care team can help
Rab Razzak, a palliative care doctor at Johns Hopkins Medicine, says one of the first things he asks his patients is: “What do you know about palliative care?” If a patient is uncertain about what it is and what to expect, he takes the time to explain it.
“From the onset, it is important that patients have a clear understanding of who we are and how we can support them,” says Dr. Razzak. “It’s the first step in building an open and honest relationship.”
Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the pain, symptoms and stress of a serious illness. The core palliative care team typically includes palliative care doctors, nurses and social workers.. This team approach is in place to offer you an extra layer of full, well-rounded support.
You will get to ask questions
Palliative care is a two-way relationship between you and your specialists. In every meeting, you have the opportunity to ask any questions you may have about palliative care, your illness and your treatment options. Here are some suggestions of what to ask in your initial meeting.
You will be at the center of your care
Palliative care is a patient-centered approach, which means that the team wants to hear your story. In addition to addressing your pain and other symptoms, they will give you the chance to discuss how the illness is affecting your life. If willing, you’ll also be able to talk about any fears or anxieties surrounding your illness, treatments or medications.
“Every person is different,” says Dr. Razzak. “Because of that, it is vital that we get to know who the patient is and what his or her values are so we can begin to discuss goals or decisions regarding treatment options or pain management plans.”
Your loved ones have seats at the table too
Your palliative care team welcomes your family members or anyone in your support system to each meeting. Your team can provide them emotional support, and can give them tools to help care for you. If you would like, they will also include them in the decision making.
Laura is the daughter of a patient who is receiving palliative care. Here she discusses the impact of meeting with the palliative care team.
All of your information will be explained
The palliative care team works in close partnership with your other doctors. Because of this, they can provide you a full understanding of your illness and your symptoms.
In this video, Amy, a woman who was diagnosed with Stage IV inflammatory lung cancer and is currently living well thanks to palliative care, discusses the importance of having all of your information in one place.
The goal of the initial meeting is to eliminate any confusion surrounding your care. You and your team will explore your personal goals and needs. They want you and your loved ones to leave the meeting feeling both informed and empowered to take the next steps with confidence.
Navigating the uncertain waters of high school and college can be challenging for anyone. Imagine spending those pivotal years with a serious illness.In the face of chronic pain and discomfort, constant doctor’s visits and hospitalizations and the stress that comes with giving up so much at such a young age, her goal is simple: to live the best life possible. … read more
Constipation. Everyone hates having trouble going to the bathroom and we certainly don’t like to talk about it, but it’s an important subject. If you have a serious illness, constipation is one of the most common problems you are likely to have.
Palliative care can help. Palliative care is specialized medical treatment for people with serious illnesses. It can treat your pain and symptoms, including your constipation, so that you can live more comfortably. … read more