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Living Well with Multiple Myeloma: Malcolm’s Palliative Care Story

July, 2015

Malcolm White loves the Philadelphia Eagles and socializing with his friends. But when the 51 year-old was diagnosed with Multiple Myeloma, he experienced so much pain that it became hard to focus on anything else.

“It started out gradually with, you know, pain and stiffness in the back, which gradually got worse where it became really hard to move around,” he explained. “It started early, at the beginning of this year and it got progressively worse to where I saw a doctor and had some X-rays and they ran some tests and that’s when I was diagnosed.”

As his disease worsened, Malcolm’s quality of life continued to deteriorate. Eventually, he could no longer visit with family and friends, and he ultimately had to leave his job as a bus driver. “It was really hard just getting dressed every day, getting out of bed, you know going to the bathroom,” he recalled. “All of that, it affects you, you know, your whole life.”

According to the Multiple Myeloma Research Foundation, more than 77,000 people are living with Multiple Myeloma, a form of blood cancer. The American Cancer Society estimates that more than 26,000 people will be diagnosed with Multiple Myeloma this year. For people like Malcolm who are living with Multiple Myeloma, the symptoms that accompany the disease, most notably the pain, can be overwhelming.

That’s where palliative care comes in. Palliative care is specialized medicine for people with serious illness. It focuses on providing relief from the symptoms, pain and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family.

Dr. Arthur Siegel, a member of Malcolm’s palliative care team, recalled Malcolm’s state when he was first referred to palliative care. “When I saw him, he was curled up in a ball. He was very tight. He couldn’t move because of the pain, couldn’t really get out of bed without hurting.”

But pain is more than a physical sensation. For Malcolm, like many patients, the pain that accompanied his disease negatively affected other aspects of his life. “If the pain is so severe that you need to be in the hospital, it means that you’re not going to be sleeping all that well,” explained Dr. Siegel. “You’re not going to want to eat because it hurts just to move, even to get food. It sometimes hurts to breathe and you just feel like ignoring the rest of the world.”

Malcolm’s palliative care team included Dr. Siegel, a nurse practitioner and a social worker. They immediately sat down with Malcolm to begin managing his pain and improve his overall quality of life, including his emotional well-being.

“Those symptoms that go along with pain mirror symptoms that go along with depression, and so they can go hand in hand,” explained Dr. Siegel. “Patients with chronic pain frequently get depressed or have depression.”

That’s why the multi-disciplinary nature of palliative care is so important. Team members from various disciplines work together to treat all symptoms collectively and to support the whole person. “Everybody played their part as far as my progress, through the team of doctors, the nurse practitioners, the social workers,” Malcolm said. “Everybody had a role.”

Soon, Malcolm’s pain began to subside, which he credits to palliative care. He is now and able to get around and is regaining weight and his appetite. “Things have definitely gotten better compared to a few months ago,” he said.

And now? He is back to focusing on what matters most to him: spending time with loved ones.

“I did attend a family reunion recently and have gotten together with some people, so yeah. It’s easier for me to get with people than it had been,” Malcolm noted. “The palliative care definitely helped.”

For palliative care physicians like Dr. Siegel, that’s music to his ears.”That’s what being a doctor is all about, is helping people feel better and live their lives. And palliative care allows patients to do just that.”

A Quality Life: Episode 3, Shari and Jim’s Palliative Care Story

June, 2015

In this episode, we hear from Shari McClendon, who has pulmonary hypertension. We also speak to her husband and devoted caretaker, Jim. Shari and Jim detail the critical role that palliative care has played in improving their quality of life. Shari and Jim speak to how palliative care has supported their entire family in a variety of ways. Mary Martin, a nurse on the McClendon’s palliative care team, shares how the palliative care team helped Shari and her entire family deal with the realities of this disease. At the core, this episode is about Shari and Jim, and how their 38 year marriage has endured.

Dealing with Serious Illness Together: Shari and Jim’s Palliative Care Story

June, 2015

Serious illness can dramatically change not just the life of patients, but the lives of their family members, as well. In 1993, Shari McClendon was diagnosed with pulmonary hypertension, which causes abnormally high blood pressure in her lungs. Once an active hiker and skier, Shari struggled as her physical symptoms worsened.

“We had a two-story house and I first started feeling very short of breath when I went up the stairs, and getting more tired, and not having as much energy as I had,” explained Shari.

Shari’s illness also continued to affect her life as it progressed over the next 20 years. “I just had to continually, nearly every year, just reevaluate my life and see how I’ve had to slow down. And so it went from, you know, not being active and that, but eventually we had to sell our home and get on a one-story, and then I had to quit my job.”

Over the course of her illness, Shari continued to suffer from physical symptoms and increasing anxiety and depression.

“She just kind of crashed about two years ago, just exhausted from living, I think, and it was getting worse,” recalled her husband of 38 years, Jim. “I was looking for someone to help Shari deal with her depression.” He was referred by friend and cardiologist Dr. William Burnett to palliative care.

Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Shari’s palliative care team included a physician, two nurses and a nun, who all worked together to provide various kinds of support for the McClendon’s. “They’re just real good to visit with me,” Shari noted. “I express my concerns, my needs, and they either check with the doctor and find out, you know, things.”

After a particular meeting with Sister Julie, the nun on her palliative care team, Shari’s perspective began to shift. “One of the things I had jotted down is that Sister Julie said ‘Treasure the moment,’ and that really helped me because I think I was so focused on the future and what was going to happen in the future that I was missing some moments here. And then another thing that she had said was ‘Trying to accept’ – and they’ve worked and worked with me on this one – is ‘being, not doing.’”

Jim and Shari McClendon

Jim and Shari McClendon

But serious illness doesn’t just affect the patient; it also affects the caregiver and the family. Shari’s whole family received support from the palliative care team, as Jim notes. “They’ve done a lot for me, yeah,” he said. “We have three children…they’re all three adults. They got to meet the team, so the team kind of knows our kids, too, and how they’ve grown up in this.”

Palliative care also gave the entire McClendon family the ability to talk openly about what was happening and to center her quality of life in Shari’s care.

“She doesn’t have cancer, she doesn’t have emphysema,” explains Jim. “They’ve kind of helped us know how to explain things to our friends and family.”

While helping them deal with her serious illness, palliative care has also allowed Jim and Shari to enjoy the simple joys of being married – cooking together and spending time with their family, for instance. Palliative care has also enabled them to take stock of what matters most to them – their loving partnership and precious family.

“They tell us what good people and what a good marriage we have, to have the family we’ve got – you know, they just remind us that our lives aren’t all bad,” Jim said.

For Shari, palliative care isn’t just an aspect of her overall care: “They’re part of our family.”

 

 

A Quality Life: Episode 2, The Shu Family’s Pediatric Palliative Care Story

June, 2015

In this episode, we hear from Dannell Shu, whose son was born with severe brain damage. Dannell discusses the role the pediatric palliative care played not just in improving Levi’s quality of life, but in supporting the entire family as it navigated the waters of his chronic condition. Jody Chrastek, a nurse on the Shu family’s palliative care team, details how pediatric palliative care brought joy into Levi’s life in this moving take on what it means to care for a child living with serious illness.

A Quality Life: Episode 1, Christine’s Story

June, 2015

In the first episode of our Quality Life Series, we hear from Christine Buehlmann, a California woman whose life changed dramatically after she was diagnosed with ovarian cancer and began receiving chemotherapy. Christine discusses how the physical and emotional symptoms of her disease and its treatment were hindering her quality of life, until she received palliative care. Both Christine and her palliative care physician Dr. Joshua Fronk elaborate on the critical role that palliative care played in Christine’s treatment and life in this honest and compelling take on living with serious illness.

Caring for a Child with Serious Illness: The Shu’s Palliative Care Story

May, 2015

Welcoming your first child into the world is truly a life-changing moment for anyone. For Dannell and Peter Shu, it was beyond anything they ever imagined.

Their newborn son Levi was born with brain damage.

“When Levi was born, he was born without a heartbeat or a breath. He didn’t move and he didn’t cry,” recalled Dannell Shu, Levi’s mother. “And it was in that moment that we changed course.”

Dannell and Peter knew that they and their newborn son needed immediate and lasting support. They began pediatric palliative care soon after Levi’s birth.

Pediatric palliative care is specialized medical care that focuses on providing relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis. The goal is to improve the quality of life for both the patient and the family.

Dannell was immediately struck by the ways in which the palliative care team adapted to Levi’s specific behaviors and challenges. “One of the ways the palliative care team helped us in the first couple hours, and couple days, was to be the example,” Dannell remembered. “They were peaceful and comfortable and willing to slow down.”

Levi Shu is one of nearly 14% of US children ages 0-17 have special health care needs, according to the National Hospice and Palliative Care Organization. For families like the Shu’s, pediatric palliative care not only helps control the symptoms of the child’s illness, but it helps the family to understand all of the treatment goals and options. Because of the complex nature of his health needs, Levi has over fifteen doctors and specialists on his medical team. The Shu family’s palliative care team served as a critical link in bringing the varying recommendations and opinions for his care together.

The Shu family’s palliative care team became their lifeline. “Our palliative care team was the first call that we made in regards to Levi’s needs,” Dannell noted. “Everything from ‘Something’s really going wrong and we don’t understand it,’ to ‘I think I just gave him the last dose of a medication that he’s going to need again in six hours. How do I get a refill?’”

In addition to coordinating his care and providing the Shu family with financial and social resources, the palliative care team also worked to ensure that Levi’s quality of life was at the center of his care.

“His family was very clear that this was about Levi’s quality of life, that palliative care means living fully and joyfully to the best of his abilities, and that’s what we do in pediatric palliative care,” said Jody Chrastek, a nurse on the Shu family’s palliative care team.

For Dannell and Peter, that meant allowing Levi to experience joy and explore the world around him as much as possible. For example, when a music therapy group was introduced into his care, Levi delighted in it. “They just brought so much light into his life,” recalled Nurse Jody Chrastek. “It was fun to see him react and be aware.”

Dannell Shu hopes that Levi can serve as an inspiration to all families with seriously ill children.

“My child should be a poster child. He’s happy and has a quality of life that is far beyond anything anybody’s ever imagined for him because the palliative care team has been involved with him, with us as a family and with us as parents,” she explained. “I’m a huge advocate for palliative care, particularly for pediatrics. Our lives have been transformed.”

Living Well with Ovarian Cancer: Christine’s Palliative Care Story

April, 2015

Listen to the first episode of our new podcast series, “A Quality Life,” featuring Christine’s story:

No matter who you are, receiving a diagnosis of a serious illness can be life-altering and difficult emotionally. When Christine Buehlmann was diagnosed with ovarian cancer, she saw her life change radically.

“I am usually a very positive person and it was so overwhelming that I was going into a very deep depression,” she said. “It dramatically changed my life and I was completely devastated.”

Prior to her diagnosis, Christine valued her job as a physical therapist who worked with cancer patients. Yet as the symptoms of both her ovarian cancer and the chemotherapy to treat it worsened, she found that she could no longer trust her body. “I was not able to work and I could not even cross the street. I would look at other people and they were so fast that sometimes the light would change red and I was not even finished crossing yet.”

According to the Ovarian Cancer National Alliance, there were 21,980 estimated cases of ovarian cancer in 2014. For patients with ovarian cancer and their families, the diagnosis itself can be challenging enough, let alone dealing with the stress and symptoms of the disease and treatment.

But Christine knew something that many patients don’t: there is a way to live better with serious illness. She asked for palliative care.

Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with 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.

For Christine, maintaining her chemotherapy regimen was a priority, but so was allaying the symptoms that it caused.  “She was having complaints specifically of worsening migraines, constipation and nausea, mostly all related to the chemotherapy regime that she was on and really wanted assistance with managing her symptoms because they were really impacting her quality of life,” noted Dr. Joshua Fronk, Christine’s physician on her Stanford palliative care team.

In addition to Dr. Fronk, Christine’s team included a nurse practitioner and a social worker. They immediately sat down with Christine and her husband to address their goals of care.

For Christine, returning to an active life was critical. Her team made medication recommendations to get her symptoms under control, which dramatically improved Christine’s quality of life. Because her team was able to get her symptoms under good control, Christine was able to regain some of the physical mobility that she lost when first receiving chemotherapy. “With palliative care being involved in my care and coordinating with my doctor, we were able to insert a ski trip in the midst of my chemotherapy, and that was such a gift,” noted Christine.

As anyone who has faced a serious illness knows, physical symptoms are only one part of the equation. That’s where the interdisciplinary approach to palliative care can help; physicians and nurses work alongside other specialists to provide an extra layer of support that extends beyond physical symptoms to treat the whole person. Christine’s connection to the social worker on her team played an integral role in her care and even provided much-needed support for Christine’s caregiver, her beloved husband. “He felt very comforted to know that this person that he loves is being cared for as a whole person,” she explained.

Palliative care continues to see rapid growth in the United States; over the last 11 years, its prevalence in U.S. hospitals with 50 or more beds has increased over 165 percent. Dr. Fronk attributes this rise in both access to and demand for quality palliative care to the specialty’s unique approach: “We’ve become very specialized in medicine that everyone has their own organ system and aspect of the body that we’re responsible for, but people aren’t organ systems; people are people, and these medical problems fall into many different realms of who that person is.”

Christine is living proof that you can live well with serious illness, a reality she attributes to palliative care.

“I could not imagine going through what I went through without palliative care as part of my team.”

 

Palliative care helps your doctor, too

March, 2015

When you have a serious illness like cancer or heart disease, your relationship with your doctor is important. It’s so important that many patients worry their doctor will be upset if they ask for extra help to cope with pain or other symptoms.

The truth is that doctors are glad to have an extra layer of support. Why? Because it helps them focus on fighting your underlying illness.

Doctors know their patients will do better if they have less pain and well-managed symptoms. Patients also cope better if they have in-depth communication about their options for medical treatments and how those match their personal goals. But specialists for cancer or heart disease don’t always have the time or the know-how to deal with these parts of your care.

That’s where palliative care comes in.

Palliative care is a medical specialty provided by a team of doctors, nurses, social workers and other specialists who work with your other doctors. Your palliative care team will work closely with you, your family and your doctors to build a plan for your care that centers on your own goals and needs.

You can get palliative care at the same time as treatment for your disease. It will help manage your pain and symptoms. It will help you understand your treatment options. And it will help you, and your family, cope with the day-to-day challenges of living with a serious illness.

Your doctor will be relieved to have a palliative care team focused on improving your symptoms and quality of life. So, if you are dealing with symptoms and side effects from your illness, just ask for a palliative care referral.

Palliative care helps manage the symptoms and stress of serious illness. How can you find it?

January, 2015

If you or a loved one have a serious illness, it can be hard to find the help that you need – even from your regular doctors.

You may have pain, shortness of breath, nausea or other symptoms. You may have unanswered questions about your illness and what the future will bring.

Palliative care can help. Palliative care is specialized medical care for people facing serious illness. It provides an extra layer of support for you, your family and your doctors. Palliative care will help manage your pain and other symptoms. It will help you understand your treatment options. And it will help you cope with the day-to-day 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. It is a team approach to care that puts you back in control of your life.

Our website has a directory to help you find a hospital in your area that provides palliative care. Just go to http://www.getpalliativecare.org/howtoget/ and choose your state to find a list of hospitals with palliative care services.

If you or your loved one are already in the hospital, ask your doctor for a palliative care consultation. Most large hospitals in the U.S. now have a palliative care team that will visit you and your family.

Your palliative care team will include a doctor, a nurse and social worker – all of them specialists in palliative care. Other kinds of specialists may also be brought in with the team.

There are also palliative care services to help you outside of the hospital. You may be able to get help at home, at your local doctor’s office or in your cancer center, for example. Getting support outside of the hospital can help you avoid unwanted trips to the emergency room and hospital stays.  Ask your doctor for a referral, or call your local hospital palliative care team for more information.

You and your loved ones deserve to have the best quality of life possible while dealing with a serious illness.  That’s why it’s important to get palliative care.

Do you have a serious illness? Palliative care can help.

December, 2014

Do you, or someone you love, have a serious illness? If so, you may wish you were spending more time enjoying life, and less time coping with pain, stress or other symptoms. Palliative care can help.

Palliative care is an extra layer of support for you, your family and your doctors. It will help manage your pain and symptoms. It will help you understand your treatment options. And it will help you cope with the day-to-day 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. It is a team approach to care that puts you back in control of your life.

It doesn’t matter how old you are. You should have palliative care as early in your serious illness as possible – even from the point of diagnosis. Palliative care can help you with cancer, congestive heart failure, lung disease, kidney failure, Alzheimer’s, Parkinson’s or Amyotrophic Lateral Sclerosis (ALS), and many more.

Palliative care can help you find relief from pain, shortness of breath and fatigue. It can treat constipation, nausea and loss of appetite. It can help you sleep and overcome depression. It can also help you cope with your medical treatments. Managing these symptoms can give you the strength you need to carry on with your daily life.

You don’t have to wait until your symptoms become serious to ask for palliative care. In fact, the sooner you ask for it, the better for you and your family.

So how does it work?

Palliative care is a medical specialty. It is provided by a team of doctors, nurses, social workers and other specialists who work with your other doctors. Your palliative care team will spend as much time as needed with you and your family to learn about what you need and what you want out of life. They will help you understand your options for treatment, and they will help you talk to your other doctors about your choices and build a plan for your care. Your palliative care team will also help your loved ones cope while they care for you, so that your family can have a well-deserved break.

Your disease does not run your life, you do. Take back control and ask your doctor about palliative care.