Making Health Decisions as a Cancer Caregiver

The cancer care team will always discuss major health decisions with the patient if they can think clearly and share their thoughts. A patient’s decisions will be carried out as long as they are safe and don’t cause problems.

How do I know what the patient wants?

Everyday choices are easier to make if you understand the patient’s wishes, habits, and values. What’s most important in the patient’s life? Everyday choices include deciding what to wear, when to bathe or eat, and what else to do after that. But when you’re dealing with cancer even these simple choices can be too much and hard to make.

Sometimes even a small crisis can make the patient unable to express what they want or need. As much as possible, honor the patient’s wishes, but be realistic about the limits on what you and other caregivers can do. Sometimes, what the patient wants is not what others want or will do for them. When patients need help carrying out their wishes, it can be hard on those who want something different from what the patient wants.

What if the patient won’t do things for themselves?

This can be frustrating for a caregiver. You may feel that the patient is able to do some things for themselves, but they don’t. Sometimes there are medical or emotional causes for this, such as severe tiredness (fatigue) or clinical depression. If you’re not sure, get in touch with the patient’s doctor and tell them exactly what is happening. The cancer care team can help you figure out what may be going on.

It’s not always needed and may seem hard to do, but sometimes you might have to set limits. For example:

• Try to figure out what self-care tasks the patient can safely do, such as bathing, dressing, and going to the bathroom. If you don’t know what the patient can do, ask a member of the cancer care, physical therapy, or occupational therapy team to evaluate the patient. Social workers may also be able to help with this if assistive devices are needed.
• Encourage the patient to do as much for themselves as they can.
• Encourage the patient to talk about things they enjoy so the conversation isn’t always about cancer and illness.
• Let the patient make as many personal choices as they can. If they’re overwhelmed with decisions, give them simpler choices by saying, “Would you prefer chicken or fish for dinner?” or “Would you rather wear your blue pants or the brown ones?”
• Get others involved if the patient is avoiding treatments or doing things that can cause harm. Family members can be a strong source of influence. Rally them for support.

Remember that you can also get professional help, such as a social worker Use the resources and services of the cancer care team when you need them. They can help you find the support you need, such as mental health counselors, home care services, or financial assistance, so that both you and the patient have the help you need.

What if the person with cancer can't speak for themselves?

There are legal documents that can allow a designated person to share the patient's treatment decisions and wishes. Health care decisions can be made ahead of time in writing and expressed through the following documents:

• An advance directive is a legal document that explains how you (the patient) want medical decisions about your care to be made if you cannot make them yourself. Give a copy of the document to the health care team.
• Durable power of attorney for health care is a legal document that names a person to be your health care proxy, a person who can make health care decisions for you if you are unable to make these yourself.
• A DNR order (do not resuscitate) says a patient does not want CPR if their heart stops beating.

What if there’s abuse in the family?

Any crisis or stressful change can worsen abusive behaviors in families that already have tension. The crisis of a cancer diagnosis can take a toll on both the caregiver and the patient.

Patients are more commonly seen as victims of abuse, but sometimes the patient may be the abuser. Again, the stresses of cancer may make your relationship more difficult. If the patient’s behavior becomes abusive after cancer treatment, the doctor can check to see if there are medical reasons for it. Just because the patient is sick, does not make abuse okay.

There may be misunderstanding, tension, hurt, and anger – but it’s important to have ways to deal with these feelings so they don’t happen all the time. Emotions need to be expressed and accepted. The cancer care team usually assumes that patients and their caregivers treat each other with respect. They don’t assume there is emotional, verbal, physical, or sexual abuse. But it’s important for them to know if abuse  is happening or has happened in the past. Talk to someone on the cancer care team if you need help.

When do I call the doctor?

Sometimes it’s hard to know if something is “bad enough” to call the doctor after hours or in the middle of the night. The best way to know when to call is to ask for a list of possible things to watch for. Ask the doctor or nurse what problems you need to call about right away, no matter what time it is.  You can also ask what things can wait until the next day or the next appointment.

Also be sure you know whom to call after hours, on weekends, and on holidays. If you don’t have 24-hour access to someone on the cancer care team, find out what to do if there are problems. Should you call your pharmacist if there are problems with the medicines? Should you go to the ER? Have an emergency plan in place just in case problems come up after the doctor’s office is closed.

For more details on when to call the doctor, see  Managing Cancer-related Side Effects.

What if the patient needs to be moved or relocated?

Open and honest discussion with the patient and other family members is the first step in deciding whether the patient needs to live somewhere else for a time, instead of alone.

Cancer and its treatment can cause confusion, forgetfulness, and unsteadiness walking, and may worsen the symptoms of other conditions such as dementia. Patients can harm themselves by forgetting to take medicines, not eating, leaving the house, or losing track while cooking. Patients can be a danger to themselves and others if they start to hit, bite, or throw things at caregivers or family members. In such cases, the cancer care team needs to know about these behaviors. The patient may need to be hospitalized if whatever is causing the problem can be treated.

Sometimes the less serious problems can be managed at home if someone can stay with the patient at all times. These problems call for a special discussion by the family for them to possibly take turns staying with the patient. Otherwise, the family might assume that the caregiver will be the one to stay home and provide 24-hour care for the patient.

Family meetings with the patient, spouse, children, siblings, and other key people can allow everyone to share their thoughts and can help you decide what to do. Sometimes these talks can be very difficult and emotional, but certain topics will need to be covered.

• The amount or type of care needed. For instance, does the patient need 24-hour supervision? What can they safely do without help?
• What other living arrangements are available? Can the patient move in with another family member? An apartment closer to the primary caregiver? A smaller house? An independent retirement community?

This discussion can be tricky if the patient gets confused or fearful at times. It helps to have the doctor or occupational therapists’ (OT) assessment of the patient’s needs. For example, if their professional opinion is that the patient cannot be alone at all, and the only caregiver has to work full time, something else must be done. An occupational therapist’s, or OT, assessment can also tell you if the patient can be kept safely in the home if certain changes are made. Ask your doctor about a referral to an OT. This may be easier if the patient is in a hospital or extended care facility. Ask the doctor or nurse about getting an OT evaluation before the patient leaves.

Is a nursing home or extended care an option?

There may come a time when your loved one needs extended care or nursing home care. Even though you might not be with the person all day, you’ll still find that you’re a caregiver. It just may look different, since you’re no longer providing all of the hands-on care. But you’ll still be talking with the staff at the facility, visiting the patient, and staying in touch with those who are providing care.

You’ll also be the first one called if there are problems. Your caregiving experience will help you deal with the situations that may come up. You also will know who to call if more help is needed.

What if the patient refuses to leave home?

Sometimes the person with cancer decides they don’t want to live anywhere else but home. It can be a very emotional thing to leave home, even if it’s only for a short time, and emotions are already high. Patients may feel that they’ll no longer be able to set the rules or control their own lives, or they may be afraid of not being as independent as before. Maybe they don’t want to feel they are a burden to others. And if they’ve lived in the same place for a long time, they probably have strong ties to the community, family, friends, and health care providers, as well as social lives and daily routines.

In some cases, you have to be firm, especially if the present situation is unhealthy or unsafe. If you feel you need to act against the wishes of the person with cancer, be direct and explain what you’re going to do. In other cases, there’s room to work something out. Be sure that you, the patient, and all caregivers have looked at all options.

You’ll also need to talk about each person’s concerns. For example, things like keeping the patient safe, convenience of the decision, finances, and the care needed are important to discuss. It helps to check out the physical setting and set up a timeline of patient needs. For example, are there certain times during treatment when someone needs to be with the patient? Where will the patient sleep? How about getting up and down the steps inside or outside the house?

If this still isn’t working, a social worker may be helpful in finding other options and setting up plans that will work. It may also help to have a family meeting with at least some members of the cancer care team so that you can get their input and support. Home care services may need to be looked into for support.