Are you or a loved one facing a serious illness? Palliative Care can help. Palliative care is specialized medical care for people with serious illness. It is appropriate at any age and at any stage in your illness, and you can have it along with curative treatment. The goal is to relieve symptoms and stress and improve your quality of life.

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.

Living with chronic kidney disease? Palliative care can help

March 25, 2018

If you have chronic kidney disease, you know that managing your symptoms and keeping to your treatment plan is hard on you and your family. Palliative care can help you cope by giving you an added layer of support.

Palliative care is specialized medical care for people living with serious illnesses like kidney disease. The goal is to improve quality of life for both you and your family by treating the symptoms and stress of the disease. Palliative care is provided by a team of palliative care doctors, nurses and other specialists who work closely with your other doctors. It is appropriate at any age and any stage of your illness, and it can be given alongside all your other treatments.

… Read More

Living well with serious illness: Cathy’s breast cancer story

March 11, 2018

Cathy, 62, has always loved jogging and doing step aerobics, but her true passion is tending to the flowers in her garden.

“I just love being outside and getting my hands in the dirt,” says Cathy, born and raised in Dayton, Ohio.

Cathy will be the first to tell you that gardening takes both patience and the willingness to start anew when a flower doesn’t grow like she’d hoped. “It’s okay when something doesn’t go your way out there. It’s all about adapting and moving forward,” says Cathy.

Cathy has had to apply those same principles to her own life as well. A diagnosis of stage IV breast cancer in 2012—the second time she had been diagnosed with this illness—halted her active and productive life. She faced an uphill climb of difficult chemotherapy regiments and an uncertain future.

After dealing with painful symptoms from the chemotherapy and the stress of managing the ups and downs of her battle for over four years, she asked for better care from her medical professionals. She was referred to palliative care who now work every day to get her back to her active life.

This is Cathy’s story.

… Read More

Treating pain and breathing challenges: Matt’s palliative care story

March 4, 2018

Matt is about to start another abstract painting. With classic rock music blasting in the background, he holds the brush between his lips, steadies his neck and presses the brush against the canvas.

A few months ago, Matt, 38, wouldn’t have believed you if you told him he’d be painting again. Fourteen years ago, a severe car accident left him paralyzed from the upper chest down. While his diaphragm wasn’t paralyzed in the accident, it was weakened significantly, which has caused Matt to have breathing problems that have grown progressively worse over time. Those issues coupled with severe nerve pain and the emotional stress of dealing with the traumatic events of the accident have been a daily struggle.

After a recent 13-week hospitalization for low oxygen saturation, Matt and his family asked if there was something more that could be done to help with the many symptoms involved with his physical issues.

They asked for palliative care.

… Read More

Improving quality of life for people living with congestive heart failure

February 11, 2018

Life with congestive heart failure (CHF) can be a difficult journey. Your symptoms may get in the way of day-to-day activities, your family members may worry about how to take care of you, and you may be unsure about what to expect and how to plan for your future. Palliative care can help make that journey easier on you and your family, so you can live as well as possible.

Palliative care is team-based medical care that is focused on improving quality of life for people living with serious illness and their families. It provides an added layer of support to control your pain and symptoms and to coordinate your care. Your palliative care team will work closely with your heart doctor and any other doctors who are treating you, to make sure your treatment plan is right for you. … Read More