Today’s blog post is by our intern Bradie Schoemehl, who explains what palliative care is and why it can be beneficial for people with ALS.
By Bradie Schoemehl,
Anyone affected by ALS knows that the loss of the everyday things in life is one of the hardest obstacles to face when battling this disease. The walks around your favorite park are no longer possible; losing the ability to have weekly anticipated outings with family and friends; no longer being able to reach out and grab the hand of a loved one. A person with ALS and their family do not need to face these challenges alone, which is why a palliative care team is so important. Facing this disease head-on is made easier when patients are not only surrounded and supported by loved ones, but also by a dedicated team of professionals. It is the goal of palliative care that patients’ wants and wishes are respected, quality of life is a top priority, and what can be controlled will be controlled.
What is Palliative Care?
Palliative care is an approach that improves the overall quality of life of patients who are facing a life-threatening disease or illness, which is why it provides significant benefits for those with ALS. It is imperative for patients and their families to know the key distinctions between hospice care and palliative care to determine which method is right for them. Palliative care can begin at any stage of illness, while hospice care typically begins when life expectancy is six months or less. In a palliative care plan, patients may be on or off treatment and care is typically delivered in a medical setting, whereas hospice care is given at home so the patient is more comfortable. Although these forms of care differ, their overall goals remain the same for a person with ALS: promoting quality of life, focusing on symptom management, and utilizing an interdisciplinary team approach.
The palliative care team acts not only as a guide through different treatment and health care options, such as walking through mechanical ventilation, artificial feeding/hydration options, etc. but also as a support system. They are called a team not only because palliative care consists of a multidisciplinary approach, but also because the different skills and professions that work together spin a web of comfort and support. The team can include a neurologist, physical therapist, occupational therapist, respiratory therapist, dietician, speech-language therapist, nurse, and many more to ensure patients receive the utmost attention and care they need. A great way to look at how palliative care works is through this metaphor: think of a person with ALS as a bridge. When faced with the intense obstacles and weight put on by this disease, this person can feel as if their bridge is going to collapse. Palliative care acts as strong support underneath the bridge to prevent it from crumbling. They help patients and their loved ones against the pain, depression, and anxiety of losing motor functions and becoming more and more dependent on others as the disease progresses. Palliative care also helps the family make hard decisions, and can enhance communication between patients and family members as a whole. The team will walk the patient through different options and determine their goals and wishes so that they can be carried out and respected. It is important to note that palliative care is not end-of-life care specifically. Its purpose rather focuses on support and comfort and helps those impacted by ALS, or any other life-threatening disease, to live their life as they want to for as long as possible.
Palliative Care in Action
One of the most common fears and biggest impacts of ALS on patients is losing control. It is difficult for patients to let their loved ones take on the “burden” of helping them eat, bathe, go to the bathroom, etc. as well as the physical and emotional pain and discomfort of swallowing, breathing, and talking. The palliative care team will help the patient and family fully understand ALS and the course it will likely take as well as going over any interventions that can manage symptoms with the goal to maintain comfort as well as therapy goals such as maintaining functions and strength for as long as possible. The team will explore different treatment options to understand the pros and cons of each and which work best for the patient’s specific needs. The first complaint a lot of patients have is fatigue. They describe it as a feeling of overwhelming tiredness and a total lack of energy. Some palliative care treatment options for this symptom are energy conservation and prioritizing what kind of energy is most important to the patient. If the patient prioritizes time outside, then sitting instead of standing should be encouraged throughout the day so the patient will be able to save their energy for a nice walk outdoors at the end of the day. Engaging in activities that are important to the patient is deeply encouraged and prioritized by palliative care teams. Because palliative care focuses so strongly on quality of life, they work with the patients and loved ones restlessly to ensure ALS does not have the power to rip away their happiness and well-being. Dr. Elyse Everett, a Neuropalliative Care Physician at the ALS Clinic at Washington University in St. Louis, put the concept of symptom relief beautifully in simple terms: “There is a lot we can do if we just pay attention.”
If you or a loved one has been diagnosed with ALS and is struggling with positive communication, symptom management, or understanding your best treatment options, this may be a sign to consider palliative care. Consult with your Care Service Coordinator to find options that make sense for you. If you do not yet have a Care Service Coordinator, register with our Chapter. We can be the lifeline you or a loved one needs, so do not hesitate to reach out if you haven’t already. ALS does not stop, and neither do we.