Cancer Caregiver as Decision Maker
This post is part of our series on cancer caregivers and the roles they play. In our last post, we examined the cancer caregiver's role as a communicator. Today we're looking at another important role for caregivers: Decision maker. After a cancer diagnosis, there are numerous decisions that need to be made. Medical care, finances, end-of-life decisions – it seems every decision is a big one. Patients may lean heavily on caregivers for help in making these decisions. It's a tremendous responsibility. Luckily, there are those who can help caregivers understand the options. Doctors, caregivers, and patients all play a role in making decisions.
Cancer patients have many information needs. They want to know about staying healthy, tests and treatments, side effects and symptoms, and emotional issues. Gathering information is one way caregivers help in the decision-making process. Cancer caregivers and patients often look at sources beyond their doctor for additional information, second opinions, and alternative viewpoints. It's common for patients and their families to do the following:
- Search the Internet for information about a specific cancer and its treatment.
- Research the information provided by a doctor.
- Explore alternative cancer treatments and complementary medicine.
- Ask family and friends for advice.
- Join cancer forums to learn from cancer survivors.
- Read sources they previously wouldn’t consider if those sources suggest a possible cure.
Not all sources of cancer info are credible. Good sources of cancer information include government agencies, cancer centers, medical journals and cancer organizations. The Cancer Treatment Library created by Natural Horizons has links to resources we’ve evaluated for credibility and trustworthiness.
There’s a lot of cancer information out there, some of it credible and some not. Doctors, research groups, Internet sites – who do you trust? Which information is relevant? Which is a red herring? How do you sort fact from myth? Information from outside sources can be confusing or misleading. It may conflict with what your doctor said. Sometimes it’s just plain wrong. A caregiver needs a keen eye for evaluating information and identifying credible resources to help with decision making. The National Institutes of Health offer these tips:
- Consider the source. If you use the Web, look for an "about us" page. Check to see who runs the site: Is it a branch of the government, a university, a health organization, a hospital or a business?
- Focus on quality. Does the site have an editorial board? Is the information reviewed before it is posted?
- Be skeptical. Things that sound too good to be true often are. You want current, unbiased information based on research
At some point, a cancer caregiver may need to make medical and financial decisions. This is a big responsibility. Some of the factors to consider:
- Did the patient sign an Advance Medical Directive indicating treatment preferences?
- Has the patient signed a Power of Attorney for Health Care statement?
- If an Advance Directive is not in place, are you prepared to authorize a medical intervention?
- Based on your familiarity with the patient, would s/he want this intervention?
- Have you considered alternatives such as palliative care?
- What are the faith/religious preferences of the patient? What would s/he want in light of these beliefs?
- What are the financial factors that may influence medical decisions (e.g., limited medical coverage)?
- Is the decision being influenced by someone who doesn’t want to spend money on the patient’s care?
Questions a caregiver can ask the doctor before authorizing a treatment or intervention:
- What is the likelihood of a recovery or improvement after the treatment?
- Will the patient be able to regain lost capacity?
- What is the likelihood of death within six months, even if treatment continues?
- Will the treatment be a benefit to the patient, or will it cause distress?
- What are the healthcare facility’s policies and procedures regarding the intervention that is being considered?
None of these decisions are easy, and they can be stressful on cancer caregivers. Don’t be afraid to seek help and support while caring for a cancer patient. Understanding the decisions you’ll be asked to make, and your role in the decision-making process, can help prepare you for the task.