Taking Care of Your Loved One
Many people who have lung cancer develop symptoms or side effects that affect their quality of life. Care that is provided with the intent of helping patients cope with these symptoms or side effects is called palliative care, supportive care, or symptom management. Chapter 7 of Lung Cancer Choices, the companion book to Caregiver Choices, has detailed information about palliative care for lung cancer patients. Here is an overview from the perspective of a caregiver that we hope you will find useful as you fulfill your role.
- Do not be surprised or upset if the sense of taste of the person with cancer changes from day to day and even from hour to hour. There may be days when he or she does not want a favorite food or says it tastes bad now.
- It is a good idea to keep food within easy reach at all times. That way, the person with cancer can have a snack when he or she is ready to eat. Depending on the preferences of the person with cancer, you could leave a snack-pack of applesauce (along with a spoon) or a favorite protein drink on the bedside table.
- A good rule of thumb when choosing between different foods is to focus on good sources of protein. A lung cancer patient should try to eat at least one gram of protein for every kilo (2.2 pounds) of body weight every day.
- You will probably want to keep urging the person with cancer to eat more than he or she feels like eating. It is best to offer this encouragement as gentle support. That way, it seems much more helpful than pushing them to eat. When there is no appetite, you can suggest that he or she drink plenty of clear liquids.
- The person you are caring for may struggle to eat a lot of food at a time. A good option is to suggest smaller meals more often through the day.
- It is important to talk openly and frankly about ways to manage eating problems. Having these conversations regularly can help both of you feel more in control and can avoid any major problems.
Many treatment regimens for patients with lung cancer have side effects. In general, it has been shown that a physically fit body can better tolerate drugs and treatments. So, you can encourage the person you are caring for to think about getting more exercise. While there’s no clear proof that exercise and lung health are definitively related, there are several theories that link the two. Physical activity may help improve outcomes by opening airways and helping clear mucus from the lungs. Exercise can also help us feel better about ourselves just by making us feel more energetic and healthier. Anything that has the potential to improve health outcomes is worth exploring. Consider talking about exercise with the person with cancer and encouraging him or her to talk with a medical professional about appropriate activities.
Though there is no research about exercise and lung cancer, physical activity has been shown to improve results in other types of cancer. One study showed that patients with early- to later-stage colorectal cancer that had not spread far who got regular exercise after diagnosis decreased the likelihood of the cancer coming back (recurrence) and death by 40 to 50 percent or more, compared with patients who engaged in little to no activity. In another study, the Preston Robert Tisch Brain Tumor Center at Duke University enrolled 243 patients with advanced recurrent gliomas, lethal brain cancers that usually result in around six months of life. The patients who reported they had regular, brisk exercise—like a brisk 30 minute walk five days a week— had longer life, around 21 months, compared to just over 13 months for patients who had very little exercise.
All aspects of health are connected—some exercise can improve your physical health and have a good effect on your mental health, too. Helping the person with cancer develop an exercise plan and sticking with it can become one of your key roles as a caregiver. Joining in with your own exercise might also help you manage the physical and mental stress of being a caregiver.
Patients with lung cancer have a variety of symptoms and every patient is different. Some common symptoms of lung cancer may be present throughout the course of the disease, some may come and go, and some might not show up at all. As a caregiver, it helps to know about these various symptoms.
Pain is a warning sign that something is not right. If muscles, bones, or organs are damaged, then the pain is usual a constant ache, throbbing, or tenderness in one spot. This type of pain responds to medicines that treat the source of the symptoms.
Nerve pain is quite different and requires different medications. Patients often describe the pain as shooting, burning, electric, and intense. Unlike muscle pain, nerve pain can come out of nowhere—the person with cancer may not have any pain one moment and seconds later be in unbearable pain. Opioid medications (those containing or based on morphine) usually do not help.
It is important for the person with cancer to keep a pain diary. This simple journal is a place for the person with lung cancer to truly describe his or her pain to the medical providers. It is a good way to get them information as they manage the pain of the person with cancer. As a caregiver, you can offer to help write the pain journal, making it as easy as possible for the person with lung cancer. It does not have to be complicated. A notebook that lists times, basic descriptions of pain, and how the person responds to pain medicines will do the trick.
Pain diary: Take this to your appointments.
If the person you are caring for will be taking any opioid pain medication, it is important for them to take a laxative at the same time to counteract the constipating effects. Products containing senna and bisacodyl are common but there are others, too. Polyethylene glycol, sold under the brand name Miralax, is another one. Others, including docusate and colace, are not usually effective, so encourage the person with cancer to explore other options. Laxatives are not necessary if the person with cancer has a feeding tube delivering their nutrition.
Managing constipation can seem embarrassing for many lung cancer patients to discuss. Depending on your relationship, he or she may be hesitant to talk about it. However, ignoring this issue can lead to real problems.
Shortness of Breath
Many people with lung cancer have shortness of breath, whether or not they have had surgery as part of their treatment. Be alert for any sudden shortness of breath they have and report it to their healthcare team as soon as possible. Sudden shortness of breath may be a sign of something else that needs treatment right away, such as a blood clot or fluid in the lining around the lungs. You can make sure that the person with lung cancer is aware that a sudden shortness of breath might be a big change and that they need to take it seriously.
If the person with cancer was a smoker or was exposed to secondhand smoke, he or she may have chronic obstructive pulmonary disease (COPD). In such cases, patients with lung cancer often need to use an inhaler to reduce the inflammation and narrowing of the airways in their lungs.
If the shortness of breath is not changing much over time, there are some effective therapies to manage the symptoms:
- Pulmonary rehabilitation is exercise designed to strengthen breathing muscles and other muscles. It can be very effective, though many people with lung cancer find it hard to tolerate.
- Low dose opioids can help reduce the disturbing feeling of not being able to catch a breath. When used for this, the drugs are given at very low doses compared to treating pain.
- You only need a fan in one simple method for relieving shortness of breath. Direct the air toward the person’s face. There are receptors on the human face that sense air movement and send signals to the brain to reduce the sensation of “air hunger”.
- Some people with lung cancer will need to use oxygen to manage their shortness of breath. Suggest that the person with cancer talk over this option with the healthcare team.
Opioid medication and addiction
Medicines called “opioids’ come from morphine (which is made from a type of poppy), or they are artificial forms made to have the effects of morphine. When used for a long time, a patient will become used to the effects of the drug. Medical providers skilled in the use of the opioids will monitor their use carefully, switch opioids when necessary, and taper the patient off them when they are no longer required. When the medications are taken for pain, addiction is unlikely.
However, as a caregiver, it is important for you to know that certain patients are at high risk for opioid addiction. For example, patients who have a drinking problem or are cigarette smokers or who have a family history of alcoholism and smoking are at a higher risk for opioid addiction. Likewise, people who have been diagnosed with mental health issues are more likely to develop an addiction to opioids. In all likelihood, lung cancer patients with these increased risk factors will still be prescribed opioids, but they should be monitored for safety more closely. As a caregiver, you can help make sure that the person you are caring for is properly monitored so that he or she does not become addicted.
Role of palliative care
A palliative consultation can be very helpful for patients with advanced lung cancer. Especially if the person with cancer was diagnosed with late stage disease, you should encourage him or her to seek out a palliative care consultation. There is evidence that patients who receive a palliative care consultation within eight weeks of diagnosis have a higher quality of life, report fewer depressive symptoms, and live slightly longer. This study was a surprise to many in the medical community, who had thought that palliative care was the step leading quickly to hospice.
At its best, palliative care eases symptoms and helps patients with lung cancer choose their personal treatment goals at crucial decision points. These decisions are made with their entire healthcare team—surgeons, radiation oncologists, and medical (chemotherapy) oncologists. As a caregiver, you may find a palliative care consultation especially helpful in defining your role and making sure that you are doing everything possible to support the person with cancer. At first, the person with cancer may not want to explore palliative care, but they can ask for a palliative care referral at any time. Encourage the person with cancer to look into palliative care when he or she feels more ready. See: Lung Cancer Choices, Chapter 7: Supportive Care
Integrative medicine is a total approach to care that involves the patient’s mind, body, and spirit. If the person with cancer is at all open to pursuing various healthcare approaches, we suggest that you encourage him or her to explore how integrative medicine can be used to treat lung cancer. Integrative medicine combines standard western medicine with the complementary and alternative medicine (CAM) practices that have shown the most promise. CAM is an umbrella term used to describe a group of diverse medical and healthcare systems, practices, and products that are not generally considered to be part of western medicine. CAM therapies can often help improve quality of life for individuals living with diseases such as lung cancer and have even been shown to improve health outcomes.
The person with cancer may be interested in exploring the different healthcare systems from around the world. As you help him or her search for qualified practitioners of CAM therapies, do your homework, just as you should with any healthcare provider. Encourage the person with cancer to ask questions about the provider’s experiences treating people with lung cancer and to ask about what resulted from the methods.
There are many different CAM therapies that the person with cancer might pursue as part of an integrative medical approach to lung cancer treatment. For example, some cancer patients learn to use relaxation techniques as a way to reduce stress during chemotherapy. Others find that acupuncture helps relieve nausea. And many people various ailments have found that yoga helps them manage pain. Regardless of the CAM therapies that the person with cancer explores, it is important to keep the main healthcare team, including all western medical practitioners (the doctors, nurses, and social workers) in the loop. This means openness and communication among everyone involved in the care of someone with lung cancer. You can help see that everyone on the healthcare team stays on the same page. See: Lung Cancer Choices,Chapter 9: Complementary and Alternative Medicine and Chinese Medicine in Lung Cancer