“For patients with ATTR-CM, palliative care can help improve quality of life by working to reduce the side effects of treatment and managing associated symptoms, while also addressing the emotional and psychosocial dimensions of an illness,” says Kurt Merkelz, MD, a hospice and palliative care specialist and the chief medical officer with Compassus in Houston.
Here’s how your palliative care team can help you manage life with ATTR-CM and feel your best.
1. Help You Understand and Explain ATTR-CM
ATTR-CM is complex and rare, so it’s easy to feel confused about what it does to your body, says Krista Dobbie, MD, a palliative medicine and supportive care specialist at Cleveland Clinic in Cleveland. When Dr. Dobbie first meets a patient, she spends a lot of time simply explaining how the heart works and why it’s not working as well.
ATTR-CM causes buildup of an abnormal protein in your heart muscle, which makes it stiff. Because a stiff heart can’t pump as much blood through your body, you can feel tired and have shortness of breath or swelling and fluid retention.
Your palliative care team can also help your loved ones understand your symptoms. “The other aspect of heart failure is people don’t look sick,” says Dobbie. “And so friends and family don’t understand why they can’t do what they do or why they’re so tired.”
Many people get frustrated with their own fatigue, says Dobbie. “Patients sometimes feel very badly about themselves — that they just should suck it up, do a better job, or they just need to try to exercise more,” says Dobbie.
But by explaining what’s going on, Dobbie helps her patients identify their symptoms so they can work together on a palliative care plan.
2. Adjust Your Treatment to Manage Symptoms
Because ATTR-CM affects other organs in addition to the heart, you can experience a wide range of symptoms, says Dobbie. Palliative care experts can adjust your treatment and give you other options to address specific symptoms.
For example, if you have fluid retention, some of that fluid can leak into your lungs and cause shortness of breath, says Dobbie, who also helps manage gastrointestinal (GI) symptoms like feeling full too fast and loss of appetite.
“Patients may have difficulties sleeping, decreased activity tolerance, and aches and pains that limit their usual routine,” says Deb Kylander, MD, a geriatrician and the director of Cranberry Hospice Center with Beth Israel Deaconess Hospital-Plymouth in Plymouth, Massachusetts. “Palliative clinicians act as part of the care team to help identify and manage these symptoms so that patients can maximize their quality of life.”
3. Give You Emotional and Practical Support
Life with a chronic illness can feel emotionally overwhelming, and your palliative care team can offer support.Your team may connect you with:
Support groups
Community resources
Personal or family counseling
Spiritual care
Dobbie screens her patients for depression, which is common in heart failure. She sometimes refers people to a psychiatrist or psychologist, who can offer more specialized care.
Your palliative care team can also help with practical needs like shower chairs, motorized scooters, and home oxygen, says Dobbie.
4. Coordinate Communication Between Your Providers
When you have ATTR-CM, you may see several types of providers, like a cardiologist, hematologist, and neurologist. Miscommunication between these specialists can happen easily, but a palliative care team can help you coordinate your care.
“Because palliative care doesn’t need to be a standalone service, its value lies in being integrated with the patient’s interdisciplinary teams, who are invested in their care concerns,” says Dr. Merkelz. “For ATTR-CM patients, this may mean working in collaboration with their cardiologist, primary care provider, and nurses to minimize risks to their health.”
5. Manage Your Fatigue
To help you manage fatigue, which is common with ATTR-CM, your palliative care team may recommend some tips and lifestyle recommendations. For example, they may give you some ideas on how to conserve energy, such as:
Place stools in the bathroom or kitchen so you can sit while you do your hair or cook.
Store heavy items like plates and appliances at waist level so you don’t have to reach or lift.
Keep a running list of things you need on a different floor so you can minimize the amount of times you need to use stairs.
You can also improve fatigue by making sure you’re eating enough. “If you don’t take in enough calories, you’re going to feel tired, and you’re not going to be able to enjoy the things you love,” says Dobbie. Your care team can help you come up with custom solutions to boost your calorie intake.
6. Plan for the Future
You can decide how much care you want as your disease progresses, and your palliative care team can help you communicate and document your wishes.
Some advance planning decisions can include:
Code status: If you want to be resuscitated if your heart stops
Medical decision-maker: Appointing someone you trust to make medical decisions if you can’t
Treatment limitations: Saying you only want to come to the clinic once a month or stick to certain treatments or tests
Palliative care serves an important role in this kind of planning, because your team can help you readdress and adjust the plan as much and as often as you want, says Dobbie.
7. Treat Your Sleep Problems
If you have trouble sleeping with ATTR-CM, your palliative care team can give you tips for better rest. For example, they may recommend healthy sleep habits such as:
Create a calming bedtime routine free of screens, bright lights, and loud noises.
Keep the same bedtime and wake-up time every day.
Spend time outdoors in the sunlight during the day.
Make your sleep space comfy, cool, and dark.
Avoid napping, alcohol, caffeine, and heavy meals too close to bedtime.
Dobbie also sometimes orders sleep studies to find and treat any sleep disorders, like sleep apnea.
How to Find and Start Palliative Care
You can ask for a palliative care referral at any time after your diagnosis with ATTR-CM. While some people wait until symptoms start affecting their quality of life, palliative care can play a vital role in planning for future needs, so it’s never too early to connect this type of care.
If you’d like to include palliative care on your team, you can ask your cardiologist or primary care physician for a referral. From there, your provider will tell you if you need to schedule an initial consultation, or if they will contact you to get things started.
