How Do You Take Care of a Melanoma Patient’s Basic Needs?
Cáncer patients, like all of us, have Basic Needs—those that are physiologic- and safety-related (the bottom two levels of the pyramid). We’ll start our Basic Needs discussion with the caregiving tasks that accompany the need to make a treatment plan, because that is the first step the patient and caregiver need to take after a diagnosis. Then we’ll move to caregiving tasks that support the treatment journey, everyday activities, finances, and future considerations.
Basic Needs: Helping Your Loved One Make a Treatment Plan
After a melanoma diagnosis, the patient must come to terms with that diagnosis and seek treatment. The caregiver often plays an essential role in helping the patient seek out and select a treatment option. The caregiver can play a crucial role in making the treatment plan in the following ways:
- Being the Eyes and the Ears of the Patient
For the person with melanoma, initial meetings with multiple specialists can be overwhelming. S/he may not absorb the information that is being presented. A melanoma diagnosis (or a recurrence) can be a very emotional experience, and patients can shut down emotionally. The caregiver can offer support by listening to the healthcare providers, taking notes, and asking questions.
- Being a Researcher
Every patient has a different style of decision-making. Some people want a lot of information; others want to seek expert advice but aren’t interested in delving into the data. For patients who seek a lot of information for decision-making, caregivers can assist in the process of gathering information and doing research to support shared decision-making. For patients who do not want to delve into data, the caregiver can take on that task and help frame the relevant questions for the rest of the healthcare team.
But such information gathering can, itself, be an overwhelming task. Some of the strongest voices on the internet about melanoma are often the most unreliable. You want information that is well-vetted by experts in their fields, that is based on well-designed studies, and that is up to date. To find such information, it’s important to seek credible sources. You are here at AIM at Melanoma’s website, which is one of the best sources for credible information on melanoma. The National Institutes of Health, American Cancer Society, and American Society of Clinical Oncology are three other resources we recommend.
- Supporting Decision Making
A lot of different decisions need to be made, and rather quickly, when a patient is diagnosed with melanoma. Should the patient be treated in the community or at an academic center? Should s/he seek a second opinion? What should be the treatment approach? How should the patient weigh all of the factors of each treatment, such as how the drugs are given, the convenience of the regimens, financial considerations, and family planning (if applicable)?
Sometimes a second opinion is warranted, particularly for a challenging case. The caregiver can be helpful in securing that second opinion at the beginning of the treatment journey or later, as needed. Learn more about when to consider getting a second opinion at Getting a Second Opinion.
If possible, it’s always best to be treated by someone who has experience with melanoma. AIM at Melanoma can help you find a physician who specializes in melanoma through its search function at Find a Melanoma Specialist.
AIM at Melanoma offers two helpful guidebooks to help patients in their decision-making processes: one for Stage IV patients, and one for Stage III patients.
- Being an Advocate
The caregiver’s role in advocating for the patient begins at diagnosis and is especially critical while making the treatment plan. To advocate for your loved one, you may:
- Assist with scheduling appointments
- Accompany your loved one to appointments, take notes, and ask questions
- Be a conduit for medical information for your family. If you’ll have this role, your loved one should sign a release for you to receive medical information. See https://www.ncbi.nlm.nih.gov/books/NBK396411/ for a discussion of the Health Insurance Portability and Accountability Act of 1995 (HIPAA) policies. It’s important, however, to have a conversation with the person with cancer early in the process to make sure the communication pathway is what s/he wants
- Keep track of appointments and provide or arrange transportation
- Coordinate care among various healthcare providers
- Assist with or oversee financial issues, health insurance claims, etc.
- Address any disability or legal issues
Tip: Start a binder for caregiving to keep receipts, insurance information, and other key papers. Drop a notebook in there as well, so you can take notes at appointments. You may also want to consider an emergency room plan in case you need to go urgently.
It’s also helpful to ask questions. Examples of questions to ask your doctor specific to each stage of melanoma can be found on AIM’s stage pages: Stage I; Stage II; Stage III; Stage IV; Stage IV with brain metastases.
What are irAEs?
irAEs (Immune-related adverse events) are caused by the effects of the drugs on the immune system. They can appear at any time, even after therapy is discontinued. Here are some key principles for managing irAEs that are helpful for you to know:
- It’s important to report any change in how your loved one is feeling. Sometimes the changes can be subtle. As a caregiver, you can help recognize these subtle changes
- These side effects are easier to manage when they are caught early
- Your loved one should not fear reporting symptoms. It’s better to address them early
- Your loved one should keep a wallet card on the checkpoint inhibitor s/he is taking. This information should be presented anytime s/he seeks medical care outside of the oncology office
- You should have the phone number of the healthcare provider’s office handy at all times. Know what to do after hours and understand under what circumstances you should take your loved one directly to the emergency department. However, it’s always a good idea to call the healthcare provider’s office to let them know you are taking your loved one directly to the hospital. The office may be able to call ahead
You may be asked to help your healthcare providers grade the severity of irAEs. Although you are not expected to become a triage nurse, it’s helpful for you to understand how the clinicians think through the grading of these side effects. This way, you can understand what to expect and how to recognize the symptoms earlier when they are easier to treat. Often the oncology team will look for the severity of the symptoms based on specific criteria, but much of the grading is based on the impact of the symptoms on the patient’s function. By keeping an eye out for functional changes, you can actually help identify these irAEs earlier, when they are more treatable.
In general, the way the irAEs are graded is as follows:
- Grade 1: Mild or only slight symptoms, often diagnosed because of changes in laboratory values
- Grade 2: Moderate symptoms or laboratory changes. In this case, your loved one can still take care of him or herself but has difficulty with higher-level tasks like cleaning the house because, for example, s/he is too short of breath. In many cases, the checkpoint inhibitor therapy will need to be held and corticosteroids may be used to calm the immune system
- Grade 3 or Grade 4: Severe or life-threatening symptoms. In this case, your loved one is very sick and is unlikely to even perform self-care: For example, your loved one is unable to walk to the bathroom because of joint pain. In these situations, the checkpoint inhibitor therapy is likely to be permanently discontinued. Your loved one is most likely going to require corticosteroids or other therapies to calm the immune system. S/he may need to be hospitalized if the irAE is significant
Caregiving for Patients Receiving Corticosteroids
Corticosteroids given by mouth are tricky. As a caregiver, you will need to watch for specific symptoms. Your healthcare team will need to stay in close contact with either the patient or you during the period that the corticosteroids are given. Corticosteroids can cause stomach problems, and the doctor may want to prescribe something to protect the stomach. They can cause mood changes, increased appetite, interrupted sleep, or fluid retention. They also can put the patient at risk for oral yeast infections. Because corticosteroids can suppress the immune system, your loved one may need to receive drugs to prevent infections. If the patient is on corticosteroids for a long time, they may affect the liver or cause bone loss. The patient will need to be careful using drugs or alcohol. It may take time for the oncology team to find the dose to control the irAE, so don’t be surprised if it takes multiple appointments to modify the dose. They will also need to taper the steroid dose carefully once they have the irAE under control. Click here to watch a video produced by Eric D. Whitman, MD, about the intricacies of use of corticosteroids for irAEs.
Basic Needs: Supporting Your Loved One’s Everyday Activities
Beyond addressing your loved one’s needs in dealing with the melanoma treatments, you will most likely have to provide a lot of support for daily activities if s/he is sick or experiencing side effects from therapy. Your loved one may have been able to independently perform many of these activities before, and as mentioned, it’s important for you to note the differences in what s/he was able to do previously vs now. So it’s useful to assess how much help your loved one needs to accomplish daily activities. This way you can communicate effectively with the healthcare team about how your loved one is doing overall and help catch irAEs at an early stage, when they are most manageable.
We’ll look at everyday activities in two categories: (1) instrumental activities of daily living (higher-level activities; those your loved one may need help with first) and (2) activities of daily living (basic level activities; those your loved one may need help with if s/he gets sicker). Below are lists (and visuals) of activities you might have to help with. For more information on ADLs and IADLS click here.
1. Instrumental Activities of Daily Living—Higher Level Functions
Instrumental activities of daily living are complex tasks that allow an individual to live independently. These tasks are the first types of activities your loved one is likely to need help with.
2. Activities of Daily Living—Basic Level Functions
Activities of daily living are those skills one uses to manage one’s basic physical needs. But sometimes melanoma patients may be too ill to take care of themselves and their basic physical needs. Below is a list of the self-care activities that your loved one may have difficulty performing if s/he is ill.
Where Can I Find a Caregiver?
You may need to delegate some of the caregiving tasks. You might have a team of friends and family members to help you with specific tasks, such as shopping, driving, help with keeping track of finances, etc. But at some point, you might want to consider paid help. For a detailed discussion on finding the right help, financing it, and addressing the employment and legal aspects, see resources from the Family Caregiver Alliance.
And remember: It’s okay to get help. In a 2016 study by Cancer Caregiver, 41% of caregivers for patients with cancer reported receiving paid help from aides, housekeepers, and other helpers. In other words, you are not alone in needing help.[i]
The loss of your loved one’s contributions to the family’s daily functioning can also be a challenge. Your loved one may be too busy with appointments or may not have the energy to contribute as s/he used to. Further, if you, the caregiver, also cannot perform your usual family duties because you are caring for your loved one, there may be a lot of household tasks and responsibilities that need to be assigned to extended family, friends, or paid help. For example, who will care for other family members? Who will assist with housework and prepare meals? These are real considerations for the functioning of the family that you, the caregiver, can help address.
Basic Needs: Helping Your Loved One With Finances
Make no mistake about it—this melanoma diagnosis will most likely have a negative impact on the family’s finances. In fact, the term financial toxicity is often used to describe cancer’s effect on a family’s finances.
Immunotherapy and targeted therapy medications can be expensive. Patients need to be aware of the total costs of the medications, which can differ depending on insurance situations. As a caregiver, you can help navigate these issues.
- For patients with commercial insurance: if the patient has commercial insurance, s/he generally can receive co-pay assistance from the drug manufacturer
- For patients with coverage from a federal/state program (such as Medicare, Medicaid, or Tricare): If the patient has insurance through a federal/state insurance program, s/he can’t receive financial assistance from the drug manufacturer, but s/he may be eligible for co-pay assistance from an independent charitable foundation
- If the patient is not insured, s/he may be eligible for free medications through drug manufacturers, charitable organizations, or designated hospitals, depending on income. If for any reason, you have difficulty accessing testing or therapies or need assistance with travel or housing, please visit our Helpful Organizations page
It’s Not Just About the Medications
The patient may need to miss work for medical appointments or treatment, and, as the caregiver, you may want or need to accompany the patient, which may require you to miss work. Ask yourselves the following questions: Will missing work be necessary in order to receive infusions? What happens when there are side effects? Does your or your loved one’s work require travel? Can you or your loved one switch to a flexible schedule? Concerns about the ability to work and keeping one’s job—both the patient and the caregiver—can lead to financial stress and affect the entire family.
Tip: Both the patient and the caregiver may have legal protections against job loss under the Family and Medical Leave Act. The Patient Advocate Foundation at https://www.patientadvocate.org or (800.532.5274) can assist in this process.
Basic Needs: Helping Your Loved One With Fears of Abandonment and Advanced Care Planning
A melanoma diagnosis can make the future feel uncertain. This uncertainty can include fears of being abandoned and concerns about advanced care. As the caregiver, you will most likely need to broach these subjects after your loved one has started on a treatment path.
For some people with cancer, fear of abandonment is a main concern. If patients perceive that their personal support system is inadequate, they are likely to experience more emotional problems and more physical symptoms. Some patients worry that their physicians and caregivers will abandon them if they stop active treatment. It’s best if the oncology team has what is termed compassionate presence, which means the team is able to compassionately support your loved one through his or her choices during the treatment journey and even if the patient chooses to stop treatment. As a caregiver, you can get a sense of the oncology team and make sure that there is someone on that team that can provide this support, ideally the medical oncologist. You may also be able to help this dynamic by being another voice of compassionate support. It is also important that you reassure your loved one that you are in it together and that you encourage other members of your loved one’s social support to stay involved.
While the oncology team is working to achieve the best outcome from therapy, it’s impossible to predict if, and when, things may not go as hoped. Your loved one may want to discuss different scenarios to make sure his/her wishes are met as much as possible during the melanoma journey. Advanced planning can include everything from choosing the healthcare proxy, to making an advanced directive, to addressing a will, to assessing under what circumstances your loved one would want to withdraw care and move on to hospice. It’s important to encourage your loved one to do this planning when s/he is feeling well. This subject can be touchy, particularly if the caregiver is in the will. However, if this type of planning is delayed, your loved one may not be well enough to make the decisions thoughtfully. If your loved one doesn’t have a chance to do any planning at all, there can be unnecessary additional stress and confusion for everyone involved.