Articles & Stories

Are you living with serious illness and feeling depressed? Palliative care can help.

August 12, 2018

If you’re living with a serious or chronic illness, it’s easy to overlook symptoms of depression or anxiety. You may assume that it’s normal to feel sad or worried when you’re sick, and you may believe that your symptoms are caused by your other medical problems. And while it is normal to have days when you feel blue, if those feelings of sadness don’t go away, you’re having trouble eating or sleeping, or you’re not enjoying things the way you normally do, something is wrong. Palliative care can help.

Palliative care is medical care for people living with serious illness. It provides an added layer of support for patients and families, focused on improving quality of life. It treats the pain, symptoms and stress of your illness – including symptoms of depression and anxiety – so you can feel better and live your life as well as possible. Treating your depression will not only help you enjoy things again, it can improve your overall medical condition and help you keep with your treatment plan. In some cases, it may also help you live longer. Palliative care is available at any age and at any stage of illness and is available at the same time as your other treatments.  

Palliative care is provided by a specialized team of palliative care doctors, nurses and other specialists who will work together with your other doctors to give you and your family the support you need. If you have symptoms of depression that are linked to your physical illness or the side effects of your medications, your palliative care team can work with you and your doctor to adjust your dose or explore other treatment options that will improve your quality of life.

If your depression is a separate problem, which is very common among people living with serious or chronic illness, your palliative care team can help you find the right mix of medications or therapies. This could include treatment with antidepressants, visits with a psychotherapist, or therapies like relaxation, meditation or creative outlets like art or poetry. Whatever works for you.

Palliative care can also help you manage the anxiety of living with a serious illness, by helping you keep as much control as possible. Your palliative care team can help you understand your disease and its likely course, as well as the interventions that can manage your symptoms. You and your family will be involved in treatment decisions and plans at every step of the way, so that your care plan is aligned with what you want. Your palliative care team can also help you talk to your family about what is happening.

If you, or someone you love, is living with a serious illness, ask for palliative care. Palliative care is available in the hospital, in outpatient clinics and in some areas, for home visits. Talk to your doctor about a referral to palliative care.

At GetPalliativeCare.org you can learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you could benefit from palliative care.

Webinar On-Demand: Managing Lung Cancer Symptoms and Improving Quality of Life

Listen and watch on-demand here

Recorded: Wednesday, August 8, 12 pm ET
Sponsored by: Lung Cancer Alliance

Featured Presenter
Andy Esch, MD, MBA

Webinar Description
If you or a loved one is living with lung cancer, you already know there can be difficult side effects and symptoms caused by the disease and its treatment.  Many linger and persist afterwards as well. … Read More

Pancreatic Care Action Network

Pancreatic Cancer Treatment Do’s and Don’ts

August 5, 2018  /  By Kristin Reynolds

Palliative care can help you live well with COPD

July 17, 2018

Living with chronic obstructive pulmonary disorder (COPD) can be difficult: shortness of breath, wheezing and coughing can make you avoid doing the things you used to love.  But COPD doesn’t have to stop you from enjoying your life. Palliative care can help.

Palliative care is specialized medical care for people living with a serious illness like COPD. It treats the pain, symptoms and stress of your illness, with the goal of improving your quality of life. Palliative care is available at the same time as all your other treatments, providing an added layer of support for you and your family. It is provided by a team of palliative care doctors, nurses and others who work together with your lung specialist and other doctors.  

In practice, this means that your lung specialist will help you with the medical treatment of your COPD, while your palliative care team will carefully manage your symptoms and side effects. The team will also help you make sure that your treatments are in line with goals.

Over time, people living with COPD can develop very complex symptoms that include shortness of breath, low oxygen in the blood, cough, pain, and weight loss. They can also experience depression, anxiety, insomnia and loneliness. Palliative care doctors and nurses are experts in complex symptom management and will assess and treat you for all of these symptoms. For example, for shortness of breath – one of the most common symptoms – your palliative care team can teach you breathing and relaxation exercises and advise you on how oxygen may help for low oxygen levels in your blood.  

Your palliative care team can also help you choose what kind of treatment you may want in the future. These are difficult decisions to make, but it is important to think them through. If you have severe shortness of breath or lung failure, for example, paramedics and hospitals may intubate you in an emergency. This means you will have a tube in your throat and lungs connected to a machine that will breathe for you. This can provide effective relief for some patients, but if you have advanced disease and your lungs are not going to get better, then it may cause you more suffering. Your palliative care team can help you consider all of your options. They will also help you maintain the best possible quality of life no matter what you choose to do.

If you are living with COPD, ask your doctor for a palliative care referral. Palliative care is appropriate at any age and any stage of a serious illness, but earlier is better. Palliative care is available in most hospitals, in outpatient clinics, and in some areas, for home visits.

On GetPalliativeCare.org you can learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you could benefit from palliative care.

 

Lymphedema isn’t just a side effect. Palliative care can help.

June 25, 2018

Lymphedema is often brushed off as a minor complication of life-saving treatment for cancer. But if you are living with it, you know that lymphedema can have a major impact on your quality of life – affecting both your physical and emotional well-being. Palliative care can help.

Palliative care is specialized medical care for people living with a serious illness. It treats the pain, symptoms, and stress of the illness with a focus on improving quality of life for you and for your family. It is provided by a team of doctors, nurses, and other specialists who work together with your other doctors to give you an added layer of support. Palliative care is available at any stage of a serious illness and alongside all your other treatments.

Lymphedema refers to swelling that occurs in your arms or legs, caused by blockages in the body’s lymphatic system, which is an important part of your immune system. A blockage can prevent lymph fluid from draining well. The buildup of fluid leads to swelling. Blockages are most often the result of removal of, or damage to, lymph nodes as part of cancer treatment. There is no cure for lymphedema, and you will need life-long treatment to reduce the swelling and control your pain.

Treatments for lymphedema include exercises, physical and occupational therapy, wrapping the affected arm or leg, massage and special compression sleeves or stockings. For severe lymphedema, there are surgical options too. But if you have active cancer or other conditions like high blood pressure, diabetes, heart failure or blood clots, your choices may be more limited. Your palliative care team will help you fully understand your lymphedema and your treatment options. They will take the time to talk about what is most important to you and match all of your treatment options to your goals.

As well as swelling, lymphedema can give you a feeling of heaviness or tightness, limit how well you are able to move, cause pain, and give you infections. It can also cause your skin to harden or thicken. Although it is most common in the arms or legs, lymphedema can also affect other parts of the body. People living with lymphedema can also have trouble coping emotionally and may develop depression or anxiety. Your palliative care team will assess and treat you for all these symptoms.

Your palliative care team will also help your family. Serious illness can take a toll on families, especially if they are providing full-time care for their loved one. Your palliative care team will make sure that your family has the support they need to cope with your care.

If you are living with lymphedema that is affecting quality of life for you and your family, ask for a referral to palliative care. Palliative care is available in most hospitals, and depending on your area, in outpatient clinics and for home visits.

On GetPalliativeCare.org you can learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you might need palliative care.

Quality of life after stroke. The role of palliative care.

May 27, 2018

Strokes can be life-changing events with serious physical and emotional consequences. If you, or someone you love, has suffered from stroke, you may be struggling to take it all in and feel lost in the maze of decisions for your future medical care. Palliative care can help.

Palliative care is specialized medical care for people living with a serious illness, including stroke. The goal of palliative care is to improve quality of life for patients and their families, by treating the pain, symptoms and distress of the illness. It is provided by a team of palliative care doctors, nurses and other specialists who work together with all of your other doctors. It is available at the same time as all other treatments, providing patients and their families with an added layer of support.

Your palliative care team will take the time to talk to you and your family about what is important to you, and help you understand what you can expect from your recovery. Your preferences, needs and values will provide a roadmap for your medical decisions. Your palliative care team will help you and your family understand the benefits and risks for your treatment options and will work with your other doctors to make sure your care lines up with your goals. If you are making decisions for a loved one after a stroke, your palliative care team will also help you communicate with other family members.

Palliative care includes support for families who need to make difficult decisions about life-sustaining treatments like surgery, feeding tubes and breathing machines. It also includes support for planning rehabilitation after a stroke and coordinating the care you choose. For example, what is the right mix of speech therapy, occupational therapy and physical therapy to give you quality of life? Are there other therapies, such as meditation or music therapy, that could help you achieve your goals?

Social workers on the palliative care team can also help you and your family with decisions about where you want to live and be cared for. Depending on how much care you need, options could include living at home with home health care, assisted living residences, skilled nursing or acute rehabilitation facilities. Your social worker will help you understand exactly what is provided at each level of care, including what Medicare will pay for.

Palliative care doctors are experts in complex symptom management. As well as treating physical symptoms, such as pain from muscle spasms, they will also treat emotional symptoms. People often experience depression, anger, and anxiety after a stroke. Your palliative care team can help you cope with these feelings.

If you, or someone you love, has experienced a stroke, ask for a referral to palliative care. Getting palliative care early can make a big difference for patients and families when they need it most. Almost all large hospitals have palliative care teams, and it’s also available in outpatient clinics and for home visits, depending on your area.  

Palliative Care Helps ALS Patients Maintain Control

May 20, 2018

For people living with ALS, one of the most common fears is losing control: control over your body, and control over your life. Palliative care can help you keep as much control as possible, supporting you and your family to maintain your quality of life.

Palliative care is specialized medical care for people living with serious illnesses like ALS. It focuses on treating the pain, symptoms and stress of illness, giving you and your family an added layer of support. It is provided by a team of palliative care doctors, nurses, and other specialists who will work together with you, your neurologist and other doctors to manage your symptoms and help you make important decisions as your disease progresses. You can get palliative care at any age and at any stage of your illness, and when you’re facing ALS, it’s best to get it as early as possible.

But what does this all mean in practice? If you have just received your diagnosis, your palliative care team can help you fully understand your disease and its likely course, as well as the interventions that can manage your symptoms, such as pain from muscle spasms or cramps, numbness, or the feeling of burning in the lower limbs. The team can also make sure you maintain your function and strength for as long as possible. Trouble chewing or swallowing can be a significant problem for a person with ALS, for example, and caregivers may need help to learn different ways to handle meals.

Over time and as your symptoms develop, your palliative care team will have regular, in-depth conversations with you about what’s important to you and your family. They will also help you fully explore and understand the pros and cons of different treatment choices like feeding tubes, breathing machines, and hydration. The goal is always to make sure your care matches your goals and with what you want. Whatever can be controlled, will be controlled.

If you or someone you love needs palliative care, don’t wait to ask for a referral. Early involvement of palliative care can give you the added layer of support to help you and your family enjoy the best possible quality of life.

Almost all large hospitals have palliative care teams, and it’s also available in outpatient clinics and for home visits, depending on your area. You can visit GetPalliativeCare.org to learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you might need palliative care.

Webinar: Living with Kidney Disease: Pain and Itch, and the Role of Palliative Care

Listen and watch on-demand here.

Recorded: Tue, May 15, 2018, 1:00 PM ET

Featured Presenter: Dr. Jennifer Scherer, MD, Division of Palliative Care and the Division of Nephrology at NYU School of Medicine in New York City

If you or a loved one is living with serious kidney disease, you might be struggling with symptoms such as pain and itchiness.  Read more … Read More

Living well with serious illness: Beth’s appendix cancer story

May 1, 2018

For many years, Beth, 55, of Baltimore couldn’t shake the nickname her sister and friends gave her.

“They called me Balloon Hand Beth because whenever someone needed something, my hand would float up to volunteer,” says Beth.

Beth has always been very active and willing to pitch in. In her professional life, she has worked tirelessly to improve her city’s environment one planted tree at a time as the Director of the Office of Sustainability in Baltimore. Most days, if she’s not helping out a relative or preparing to host a family holiday party, she can be found in her garden, meticulously growing her own food.

“In the garden, things don’t stay the same. Sometimes a flower doesn’t come back or you have to move things around to make it right. It’s just like life. You have to adjust to your new normal,” says Beth.

Beth has had to use this same philosophy when she was diagnosed with a rare form of stage IV appendix cancer. After multiple surgeries and chemotherapy regimens left her weak and unable to do the things she loved, for the first time in her life, Balloon Hand Beth was the one who had to ask for help. This is her palliative care story.

… Read More

Living well with sickle cell disease: Palliative care is key

April 15, 2018

If your child has sickle cell disease, you know the heart ache of watching a child in pain and unable to enjoy the simple joys of childhood. There is a way to help your child feel better and live as well as possible: ask for palliative care.

Palliative care is specialized medical treatment for people living with serious illness like sickle cell. It treats the pain, symptoms and stress of the illness, with a focus on quality of life. Palliative care is provided by a team of doctors, nurses, social workers and other therapists who work closely with your other doctors to give you an added layer of support, based on your needs and what’s important to you. It can be provided at the same time as all other treatments to help you feel as well as possible and live your life. If you, or your child has sickle cell disease – ask for a palliative care consultation. The earlier the better.

Palliative care doctors are experts in pain and symptom management, and the most common symptom of sickle cell is pain. The pain can occur in joints like knees, elbows and hips, as well as in organs, and it can last a few hours, days or sometimes weeks. It usually comes on suddenly. These pain crises can be bad enough to put sufferers in the hospital. Your palliative care team can help with medicines and techniques to relieve pain, relax and get some sleep. The right pain management plan for pain crises could keep you or your child out of the hospital and safely at home. This can make a big difference for your child both physically and emotionally, and could support them in keeping up with school attendance, homework and hobbies.

People usually have the first signs of sickle cell disease in childhood, between the ages of five and fifteen. Sickle cell disease affects your red blood cells, whose job it is to carry oxygen around your body. Irregular sickle-shaped red blood cells can block blood flow, preventing oxygen from getting around the body. The poor blood flow results in inflammation and pain, infections, and sometimes damage to organs or strokes. But there is a lot that palliative care can do to help your child live better with sickle cell disease, so they can go back to being a kid.

Your palliative care team can also help you understand complex medical information and come to terms with what is happening to you or your child. There are some new treatment options for sickle cell, based on your child’s symptoms. By understanding what is important to your family, they can help you come up with a plan for treatment that will work for your needs.

Palliative care is available in hospitals, in outpatient clinics and in some areas, for home visits. You can find providers by looking at the Palliative Care Provider Directory.