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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.
This is Amy’s palliative care story.
A lover of art, photography, travel and fun moments at home with family, Amy has always been an active person. In October 2010, she noticed a red spot on her right breast and immediately went to her doctor. Based on the appearance of the growth, Amy’s medical team was concerned that it was breast cancer. They then took a full scan, which confirmed the cancer and its stage.
“It was a devastating thing to hear. And it was surprising because I still felt great. If I had to put a penny down as a bet, I would have gone completely all in that they had caught it early. I would have never guessed it was stage 4,” says Amy.
Making an Informed Decision
For Amy’s diagnosis of inflammatory breast cancer—a rare disease—the numbers told her that 20 percent or less of people with her condition survive five years. Given this news, Amy knew she had some really tough choices to make. Because the cancer was terminal, Amy started to approach her decision from all angles. She looked into different treatment options such as chemotherapy and immunotherapy and also considered forgoing any treatment. These were not easy choices but raised important questions.
The first thing Amy did was ask her oncologist about all the options available. Her oncologist, who was trained in palliative care communication skills, worked with Amy and her family to match her treatment options to her life goals.
“When someone has palliative care training, one of the most important things they do for you is try to figure out what’s important to you based on where you are with your health and what you’re trying to accomplish,” says Amy.
Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of the disease. The goal is to improve quality of life for both the patient and the family.
For Amy, remaining an active person and continuing to work were important. After these discussions and getting a second opinion from another oncologist, Amy decided to have her pain and stress managed by palliative care and not to undergo treatments for the cancer itself that may have added side effects and increased hospitalizations. After making her decision, she felt that palliative care had given her a sense of control during this difficult time.
“I’m so happy that they had that kind of honest dialogue with me to try and support my goals. To try and support me having a good life,” says Amy.
Palliative Care is Not One-Size-Fits-All
While choosing to forego aggressive treatment while receiving palliative care may have been what Amy wanted, it doesn’t mean that this decision is right for everyone. Amy made her choice based on being actively-engaged in the discussion.
“If people aren’t participating in these conversations and decisions around their own health, they’re going to be guaranteed only to get the care and treatment that someone else thinks they should get,” says Amy. “My team advised me along the way, but they advised me on this after they asked me what I wanted,” says Amy.
Other patients may choose to continue receiving treatment for their illnesses. Those patients can still work with palliative care teams as they deal with the emotional and physical symptoms that may arise along the way. Palliative care teams often include doctors, nurses, social workers and chaplains who work with patients regardless of what kind of care decisions they make.
An Ever-changing Process
With serious illness, there are often new challenges to face. When the cancer—which had spread to Amy’s lower back—began to cause her discomfort, Amy turned to the palliative care team to help manage her pain and symptoms. They recommended radiating the painful areas, which worked well to relieve the discomfort. They then worked with Amy on a plan for if and when the pain or medication caused additional symptoms or side effects.
“Just having a plan in place made such a difference,” says Amy. “Having that support means that when I travel or go on a business trip, if something goes wrong, I’m prepared. I feel so well supported.”
The palliative care team is also there to help Amy and her loved ones deal with the emotional toll a serious illness can take.
A Baccalaureate Prepared Nurse and Senior Program Officer at the John A. Hartford Foundation, Amy continues to work full time. She also continues to travel. Since her diagnosis, she has climbed the Great Wall of China, ridden a camel in the Jordanian desert, jet skied around the Statue of Liberty, taken up the new hobby of photographing graffiti art. Amy also still works full time at the John A. Hartford Foundation.
“Being seriously ill is a terrible thing. But, if you can imagine living well in the face of serious illness, it’s such a special thing. I’ve had the benefit of palliative care to do just that. I’m living the life I want to live,” says Amy.
Want to find out if palliative care is right for you or a loved one? Click here.
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.
This is her palliative care story.
Aly has always been the type to want to do everything to her fullest abilities. That was apparent back before she ever dealt with an illness.
“I’ve always been the Type A personality,” said Aly. “That meant taking all advanced courses in high school and being in band, and I had a part-time job at Staples and was very involved in my church youth group. So it really was just this constant go, go, go.”
In high school, after feeling soreness and pain for an extended period of time, Aly was diagnosed with Juvenile Arthritis. Despite receiving treatment, her symptoms worsened. She began to lose significant weight and started to experience severe stomach issues. Just as she was beginning her freshman year at the University of Iowa, she received the diagnosis of Eosinophilic Gastroenteropathy, a condition that causes white blood cells to build up in the gastro-intestinal system and the blood.
Determined to live an active and normal life, Aly kept up with all of her classes, made many new friends and participated in the University of Iowa marching band. Towards the end of her last semester of freshman year, however, the symptoms became too much to handle. The stomach issues continued to get worse despite her close attention to her diet, and eventually she had to take her meals through a feeding tube which she administered herself. Eventually, she was admitted to the hospital for closer attention.
“I think that’s the turning point and sort of where I found myself just desperate for help in figuring out not just my physical symptoms, but also how to have the best quality of life and to make goals that were reachable and that weren’t going to put my health and my life at risk,” said Aly.
That’s when Aly found palliative care.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing relief from the symptoms, pain and stress of a serious illness. The goal is to improve the quality of life of both the patient and the family.
Aly met with Dr. Rebecca Benson, Medical Director of the Pain and Palliative Care Program at the University of Iowa Stead Children’s Hospital. Dr. Benson’s team sees over 200 young patents a year with varying illnesses including genetic and neurological disorders, cancer, heart and lung conditions and many others.
The first thing they discussed with Aly was her disappointment in not being able to live the life the way she had wanted.
“I think it was very frustrating to her to not be able to succeed in the ways that she had previously been able to succeed,” said Dr. Benson. “Having to drop a class because she’d been hospitalized and couldn’t make it to the class was a major frustration and a major loss for her,” she added.
Although Aly was initially hesitant to join the first meeting because she had been constantly seeing new specialists, Aly felt that she was supported immediately. Having a team that took the time to gain a full understanding of both her symptoms and her frustrations made a difference.
“It started with feeling like I was being listened to,” said Aly. “They let me finish everything I wanted to say before reacting to it, and I think what really made it hopeful was that I finally felt very affirmed.”
In addition to providing support for the depression and anxiety that stemmed from her illness, the team helped Aly find additional outlets for her stress. She began seeing the team’s chaplain to discuss spiritual matters and also worked with a musical therapist to express her emotions through song. These approaches had an immediate effect on Aly’s well being.
“It was the first time in a long time that I felt that there was any hope or any chance of making things better or finding a way to deal with my illness to the best of my ability,” said Aly.
With the lines of communication open and with a level of trust established, Dr. Benson’s team got to work on managing Aly’s physical symptoms. A key element of her pain management was helping her understand how articulate the ailments to her other professionals. Serving as a mediator between different specialists is a common role for palliative care teams, but for Aly, whose diagnoses have changed over the years, this was essential.
“I think palliative care gave me that voice because I needed that. Whatever I said, they had my back,” said Aly.
Dr. Benson also helped Aly set goals for herself—both short term and long term—so that she was still able to participate in social activities and attend band marches and performances.
In between returning to classes when she could, Aly would need to be admitted back into the hospital periodically when her symptoms were troubling her. All the way through, palliative care was there to support her. As the months and years progressed, a more robust pain plan and some additional support to assist her in advocating for herself were helping, but with a chronic illness, there’s always more work to be done. The emotional toll a serious illness takes on a patient can be difficult to overcome. Aly still works with the palliative care team to focus on taking small steps forward.
“The ultimate goal is to get physically better, but that can’t be true if you’re not emotionally and psychologically at a place where you can make those goals and improve each day,” said Aly.
Today, Aly is still focused on a quality life.
Aly is still the go-getter she was as a kid despite her illnesses. Although her symptoms continue to keep her from enjoying all the activities she wishes to pursue, she enjoys spending quality time with friends and family and is still working towards her degree. Becoming an advocate for palliative care has also been an exciting new venture.
“I had to change what it is I could do to bring purpose to my life, and palliative care was a big part of that,” said Aly. “Dr. Benson helped me realize that I have something that I can share with the world.”
As Aly continues to live life to the best of her abilities, she is proud of the progress she has made thanks to palliative care.
“It’s all about trying to find those ways to make your life important. And palliative care has been huge in getting me to see those parts of my life and how important they are. Palliative care has helped me to feel like I can take control back from a situation I had no control over,” said Aly.
Want to find out if palliative care is right for you or a loved one? Click here.
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
Today, advocates from the Patient Quality of Life Coalition will descend on Capitol Hill to educate lawmakers and ask for their support on the Palliative Care and Hospice Education and Training Act (PCHETA) (H.R. 3119/S. 2748).
If you have a serious illness, your medical treatments can sometimes make you feel worse. You may also feel that your pain, your symptoms and your distress are all part of being sick. It doesn’t have to be that way. Palliative care can help. … read more
The National Institute of Nursing Research (NINR) has created new materials for families of children with serious illnesses, as part of its Palliative Care: Conversations Matter campaign to raise awareness of and improve communications about pediatric palliative care. … read more