Conversations about our health, illness and end of life issues can lead to emotional discomfort and anxiety in the person sharing their thoughts, as well as the listener.
It’s best to tackle these types of “just in case” conversations when we are in good health, but sometimes they happen when we are quite ill.
We want to share with you some information and resources to help you and your family have these tough conversations and to better understand the issues.
Outlining Your Medical Wishes
Clearly, it’s best to have something in place before an illness renders you incapable of expressing your medical wishes.
Advance Directive/Living Will: This written, legal document that outlines your wishes about medical care when you are unable to make those decisions. If Terry Schiavo, the 41-year-old woman who was the centerpiece of a controversial right-to-die battle, had completed an advance directive, then her husband and parents wouldn’t have played out those private decisions in a highly-publicized 12-year legal drama.
Health Care Surrogate: Someone you designate as your representative to make medical decisions for you. This person can provide consent for transferring you to a different level of care or permission to proceed with surgery or any treatment recommended. They also have access to your medical records and can also apply for benefits on your behalf. It is important to note the person you designate does not have to be a spouse or close family member. You may appoint your best friend or a distant cousin, if you feel they will best carry out your wishes.
A healthcare surrogate cannot provide consent for abortions, sterilization, electroconvulsive therapy, psychosurgery, experiments treatments or therapies, or voluntary admission to a mental health facility.
If you do not confirm a health care surrogate, your healthcare team must follow guidelines to determine one from your next of kin: Legal guardian, spouse, your adult children, your parents, oldest sibling, or closest relatives or friends involved in your care.
Power of Attorney: This is a written authorization allowing a specific person to represent you or act on your behalf in legal matters. A durable power of attorney allows for much broader powers than a healthcare surrogate. It is strongly recommended that you consult an attorney before drawing up this document.
Sharing News of Your Diagnosis and Prognosis
Most people share news of their cancer diagnosis and prognosis after all their tests, scans, blood work and other evaluations are complete. Telling your loved ones can be challenging for many reasons.
Once you share the bad news, you will inevitably be forced to deal with their emotions. Some people will reflect your same emotions of sadness. Others will tell you about their knowledge or experience about cancer. Sometimes, people with cancer say that they get frustrated with loved ones, friends and co-workers sharing stories of everyone they have ever known who has had cancer. It’s a way of people coping with their own feelings.
I encourage cancer patients to think about the different types of people in their lives, and carefully consider what they are going to share with whom and how. Some people need to know specifics because we will rely on them as caregivers. While others, may need only the basics, if we depend on them for emotional support.
But here’s a warning: Some of our loved ones may not have the emotional or practical resources to help us. Instead, they could become a burden to you and themselves.
Telling children is another sensitive subject.
Many years of research on children and how they deal with news of cancer indicate they are incredibly resilient and thrive when they trust that adults in their lives keep them informed about important issues that affect them.
There are many resources, including books, websites and pamphlets, which help determine the best way to talk to your children or grandchildren about your cancer.
Obviously, if you need to miss work due to your diagnosis or treatment, then your employer needs to know that you have a serious medical condition. However, your diagnosis can remain private if you wish. You do have the right to not have your co-workers know anything about your diagnosis if you choose.
Many people share the news as they appreciate the support from people in their workplace. But again, it is important to know your rights about disclosure.
Dealing with End of Life Discussions
The fact that your cancer is not curable is another tough discussion to have with your loved ones, but it’s an important talk so they can make decisions about offering to help with caregiving (which is usually very much needed) and to spend time with you while they can.
Ideally, your loved ones will support your choice to stop treatment if it becomes futile or decreases your quality of life. But sometimes our loved ones have strong emotions about different treatment options or what ending treatment means. Some think you might be giving up too soon.
It is important to have faith in your own treatment decisions and not to engage in treatment just because someone who loves you doesn’t want you to stop.
I have received calls from patients near the end of their lives who want to discuss funeral plans, last will and testament or other end of life concerns. They’ve told me that their family members won’t engage in those conversations, and that planning for the end of your life is pessimistic. Keeping positive is their advice.
Having a terminal illness is challenging and scary enough without having your family restricting the discussion of important topics currently within your control. Having these conversations is important and can alleviate some of the understandable anxiety people feel as they face the end of their lives.
The do-not-resuscitate (DNR) order is one of the topics that should be discussed, and there is plenty of confusion about what it means. For instance, if your heart stops beating or you stop breathing, then medical personnel attending to you are required to start CPR. If you previously agreed and your physician concurred to make your code status “DNR,” then the health care team will allow you to die naturally.
The laws may vary slightly from state to state, but typically only you and your physician can make the decision to change your status to DNR, and you would need to have a serious or life-limiting illness to do so. You do not have to wait until your physician brings up this issue. You can bring it up any time to clarify your understanding of what it means.
While cancer is all too common these days, there are still people uncomfortable having discussions with their loved ones about health concerns and end of life wishes. Remember there are many resources available to help guide you through these conversations.
Your cancer treatment center may have an oncology social worker who can meet with you and your family and explain these medical legal issues. You can download free advance directive forms.
Addressing these issues is not giving up, and it’s not a sign that you are pessimistic. On the contrary, you are being realistic. When patients are able to have difficult conversations and address some of their end of life concerns, it can bring a sense of relief and comfort at a very challenging time.
Questions and Answers from the October Online Support Group
Participants asked a number of interesting questions during the October online support group meeting. Here, we include answers to some of the questions.
Q: Is the first session of chemotherapy hard on people?
A: It varies. Some people experience side effects of chemotherapy after the first session, while others don’t notice effects until the second or third session. A handful of patients may only notice a few mild side effects. The types of chemotherapy drugs used may cause different reactions among patients with similar characteristics. Predicting responses to chemotherapy is challenging, but thankfully, side effects are eased with pain medication, physical therapy, and lifestyle adaptations.
Q: Is it OK to be active between treatments if I feel up to it, or should I rest to recover quicker?
A: Energy will come and go between treatments, often unpredictably. Doctors often encourage mesothelioma patients to get active when they have the energy to, such as going for walks, gardening, or participating in any level of exercise they feel able to attain.
Some doctors even recommend physical therapy to help recovery and improve muscle mass (which is often reduced following treatment). Staying active and electing physical therapy may enhance the recovery process, and resting on difficult days is equally important.
Q: How long will it take for the pain and discomfort to subside after a surgery that used a mesh lining?
A: Mesh linings are often used to repair the diaphragm or lining around the heart during a pleurectomy/decortication or extrapleural pneumonectomy. The pain and discomfort may be significant at first, but over time the pain begins to subside. Some patients say it took about a year to fully recover from the pain. Hang in there, and stay in communication with your doctor about your pain level to ensure appropriate medication is prescribed.
Q: Do most mesothelioma patients become so incapacitated that they go into nursing homes?
A: No, most patients remain at home and don’t need intensive care until late into the disease’s development. The majority of people with mesothelioma are able to remain at home with the help of caregivers and supportive medical equipment. Hospice is available to assist patients and their families with proper medical care at home.
Q: Are there certain foods that may make people with mesothelioma feel better or give them more energy during treatment?
A: Oncology nutritionists often recommend healthy and whole foods to people undergoing treatment for cancer. Consuming a healthy amount of protein daily is also highly recommended (see next question). A diet containing a diverse amount of fruits and vegetables will provide an array of vitamins and other nutrients to encourage recovery, and will boost energy and promote overall health.
Treatments like chemotherapy and radiation therapy can greatly impact appetite and digestion. Chemotherapy is particularly known to disrupt digestion and zap appetite, and side effects like mouth sores can make it challenging to eat. For these reasons, it’s important for anyone undergoing cancer treatment to not stress too much about what they eat, as long as they are eating enough to sustain recovery. If all you feel like eating one day is popsicles and smoothies because mouth sores make it hard to chew, that’s OK, just do your best to consume enough calories.
Many treatment centers have nutritionists available to help cancer patients with their diet. Let a Patient Advocate know if you need help locating one.
Q: Why is protein so important during cancer treatment, and how can I easily incorporate it into my diet?
A: Your body uses amino acids, the building blocks of proteins, to build and repair tissue. Treatments like chemotherapy and surgery can reduce muscle mass and disrupt biological functions, among other side effects. As such, a healthy amount of protein is essential to repair the damage done by various cancer treatments. Consuming protein from diverse sources will help the body get the different amino acids it needs to heal and recover. And the quality of your protein matters, so opt for organic whenever possible.
People often think meat is the only source of protein, but Maureen Keane, M.S. and Daniella Chase, M.S., the authors behind “What to Eat if You Have Cancer,” say that way of thinking is outdated. Meats are considered a “complete protein,” but they’re also “complete fats” that can fill cancer patients up quickly. Plants, on the other hand, can pack in a surprising amount of protein in conjunction with a diverse quantity of essential vitamins and minerals. Plants are “incomplete proteins,” but that misnomer means they contain smaller increments of the same proteins found in meat. Keane and Chace say, “plant proteins are usually low in total fat and saturated fat; [and] they are free of cholesterol.”
For some patients, plant proteins become a quick and easy source of protein. Animal proteins generally require preparation and cooking to be ready to consume, and that can deter patients from consuming enough protein when they’re already exhausted from cancer treatment. Conversely, a spoonful of protein-packed peanut butter or a handful of walnuts are ready to eat in a matter of seconds.
Here are some other quick and easy ways to add protein to your diet:
- Store pre-cooked organic chicken or fish in the fridge or freezer. Simply reheat when you’re ready to eat.
- Add a handful of spinach to a smoothie. (Spinach contains 12 grams of protein per 100 calories, while ground beef contains 10 grams per 100 calories.)
- Stock the pantry with cans of beans. They are quickly added to rice, wraps, soups or tacos.
- Keep small bags of nuts around for a handy source of healthy protein.