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BEAUTY RECIPES WORKOUT

Palliative care frightens some people: Here’s how it helps

A red umbrella helps block rainy, stormy skies, opening up a patch of sunlight, blue skies, white clouds, and green grass

Many people and their families associate the term palliative care with the end of life. Some may think that palliative care and hospice care are one and the same. So it’s worth explaining that palliative care is a medical specialty able to help people during many different stages of health, not just during a terminal illness. Importantly, the services offered could help you or someone you love enjoy a better quality of life, ease uncomfortable symptoms, and avoid unnecessary hospitalizations.

Asmedical oncologists (cancer doctors), we’ve witnessed how helpful this care can be when people experience cancer or another serious illness. Yet we find that not enough people who could benefit from this care receive it. By addressing misconceptions about what palliative care is and who it can help, we hope more people will ask for the full range of care they deserve, and inquire about whether a referral to palliative care is right for them.

What is palliative care?

Palliative care looks holistically at ways to improve quality of life for people and caregivers by

  • helping people manage pain, nausea, fatigue, and other troubling symptoms associated with illness or treatment, to optimize their comfort and ability to function
  • providing support for depression, anxiety, or stressors such as finances or relationships that may be affected by a serious illness
  • improving care coordination by communicating with other health care providers to make sure everyone is on the same page regarding needs and preferences
  • if appropriate, explaining and providing options for end-of-life care (this form of palliative care is part of hospice care).

In many health care settings, palliative care is handled by one or a few health care providers, such as a physician, physician assistant, or nurse practitioner. In others, palliative care may be provided by a team of clinicians and social workers, spiritual counselors, and case managers.

People sometimes think of palliative care as a last resort; you might have heard this, or even thought this way yourself. It may help to know that the type of care we’re describing is now recognized as essential to treatment, even during the early stages of serious illnesses like cancer, emphysema, heart failure, and kidney disease. People can and should receive palliative care while also receiving curative or life-prolonging treatments.

Who can palliative care help?

Palliative care can help any person experiencing a serious medical problem causing physical or emotional distress.

Typically, this refers to people with life-threatening or chronic illnesses such as cancer, heart disease, lung disease, neurologic impairment, or kidney failure. It can also refer to people who have experienced an injury resulting in physical ailments, emotional distress, or both. So in a sense, these services can be offered to anyone based on their symptoms rather than their specific diagnosis. Palliative care services are also available to support families and caregivers.

Why is my doctor talking to me about palliative care?

You might feel alarmed if your doctor recommends palliative care. However, it’s important to understand that the benefits of palliative care are greatest when introduced early after a new diagnosis of a serious illness, pain syndrome, or physical trauma. In our practice, we tend to explain the concept of palliative care soon after a cancer diagnosis for people who may benefit from additional support.

Our goal is to offer information on the resources available to support well-being, not to take away hope or scare people. The better you feel, the better you’ll do. Experiencing less pain, nausea, fatigue, or depression makes medical treatments and surgeries easier to tolerate, which may expand both quality and quantity of life.

We’ve answered frequently asked questions below.

Why is my doctor talking about palliative care?

To enhance support for people experiencing tough times and serious illnesses, not when “there’s nothing left to do.”

Am I dying?

A referral to palliative care does not mean that you are dying — it just means that you and your family may need more support to help you live as long and as well as possible.

Are you still my doctor?

Yes! Palliative care providers are consultants who team up with your doctors, including your primary care doctor and other specialists involved in your care.

If I have a question, who do I call?

If your question is related to a symptom or medicine managed by your palliative care team, then it is appropriate to reach out to them. However, you can never go wrong by calling the primary doctor directing your care, such as your oncologist if you have cancer. They can field your question and send you to the right person.

What medicines will be available to me?

Any medicines to help you feel better or live longer, including cancer treatments, are available if deemed helpful by you and your doctors.

Do I have to continue seeing my palliative care provider or team?

Just like any other doctor, they are available if you find you benefit from their services. If you no longer feel that you have needs that they can address, then you do not have to continue receiving their care.

Will my family benefit from palliative care?

Yes, definitely! One of the main goals of palliative care is to improve quality of life for people and their families or caregivers through counseling, information, and helping to coordinate doctor visits and medical tests.

About the Authors

photo of Emily Stern Gatof, MD

Emily Stern Gatof, MD, Guest Contributor

Dr. Emily Stern Gatof is a hematology/oncology fellow at Beth Israel Deaconess Medical Center (BIDMC). She is pursuing a career as a breast oncologist and has a special interest in hereditary cancer syndromes. After attending the … See Full Bio View all posts by Emily Stern Gatof, MD photo of David J. Einstein, MD

David J. Einstein, MD, Contributor

Dr. David J. Einstein is a genitourinary medical oncologist at Beth Israel Deaconess Medical Center, and an assistant professor of medicine at Harvard Medical School. In addition to patient care, he leads clinical/translational research in immunotherapy … See Full Bio View all posts by David J. Einstein, MD

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BEAUTY RECIPES WORKOUT

Safe, joyful movement for people of all weights

Older woman in lilac top on a tennis court in a park, holding a tennis racket in one hand and a tennis ball in the other

A simple word we all hear often — exercise — makes many people cringe. Unhappy childhood memories of school sports or gym classes, flat-out physical discomfort, guilty reluctance, or trouble finding time or pleasurable activities may help explain this. Additionally, for some people with obesity, fear of falling or injury is a high barrier to activity, recent research suggests.

That finding has important implications for health and well-being. So, how can we make movement safe and joyful for people of all weights?

Why be active?

As you may know, being physically active helps combat anxiety and depression. It prevents bone from thinning and tones muscle, helps you sleep better, lowers your blood pressure and blood sugar, and improves your cholesterol levels. It would take numerous medications to do all that routine physical activity can do for you.

Weight loss programs often incorporate exercise. Research shows that exercise helps with weight maintenance and may help with weight loss. Beyond burning calories, regular exercise also builds muscle mass. This matters because muscles are metabolically active, releasing proteins that play a role in decreasing appetite and food intake.

What does this study tell us?

The study found that many people with obesity fear injury and falling, which interferes with willingness to exercise. It followed 292 participants enrolled in an eight-week medical weight loss program in Sydney, Australia. All met criteria for obesity or severe obesity. The average age was 49; one-third of participants were male and two-thirds were female.

At the beginning of the study, participants filled out a 12-question injury perception survey. The majority reported fear of injury or falling, and believed their weight made injury more likely to occur. One-third said that their fear stopped them from exercising. The researchers also recorded weight, height, and waist circumference, and administered strength tests during the first, fourth, and last sessions.

When the study ended, the researchers found that the participants most concerned about getting injured hadn’t lost as much weight as those who did not express this fear. Those who hadn't lost as much weight also tended to have the highest scores of depression, anxiety, and sleepiness.

Fear of injury fuels a dangerous cycle

As noted, exercise is healthy at every weight: it protects your heart, lowers your blood sugar, boosts your mood, and tamps down anxiety. It also builds balance. Weight-bearing exercise such as walking prevents bone thinning.

If worries about injury or falls cause people to avoid exercise, they miss out on the balance-building, muscle-and-bone-strengthening, and mood-enhancing benefits of regular activity. They may be more likely to fall — and possibly more likely to experience fractures if they do.

Find a blend of activities that will work for you

Everyone, at every weight, needs to find ways to exercise safely, confidently, and joyfully.

  • Start low and go slow. If you’re not currently active, start by simply sitting less and standing more. Try walking for two minutes every half hour. If you’re afraid of falling, try walking in place or alongside a friend or loved one who can provide security and comfort.
  • Ask for guidance. Consider joining a YMCA where you can engage in supervised activities, or ask your doctor for a prescription to physical therapy to help you improve your balance and build your confidence.
  • Try different activities to see what works for you. Walking is a simple, healthful activity, but it’s not the only form of activity you can try. You might enjoy swimming or water aerobics. Try pedaling a seated bike or an arm bike (upper body ergometer) that allows you to stay seated while you propel pedals with your arms instead of your feet. Adaptive activities and sports designed for people with physical limitations and disabilities are an option, too. Depending on your fitness level and interests, you might also consider dancing, biking, or anything else that gets you moving more often.

Lastly, keep in mind that many people suffer from anxiety, and a fear of falling is not insurmountable. If you’re really struggling, talk to your doctor or a mental health professional.

About the Author

photo of Elizabeth Pegg Frates, MD, FACLM, DipABLM

Elizabeth Pegg Frates, MD, FACLM, DipABLM, Contributor

Dr. Beth Frates is a trained physiatrist and a health and wellness coach, with expertise in lifestyle medicine. She is an award-winning teacher at Harvard Medical School, where she is an assistant clinical professor. Dr. Frates … See Full Bio View all posts by Elizabeth Pegg Frates, MD, FACLM, DipABLM