Making Health Decisions as a Cancer Caregiver

The cancer care team will always discuss major health decisions with the patient if the patient can think clearly and share their thoughts. The patient’s decisions will be followed as long as they don’t create safety issues.

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.

How do I know what the patient wants?

Everyday choices are easier to make if you understand the patient’s preferences, 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 overwhelming 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.

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

This can be frustrating for a caregiver. You feel sure that the patient can do some things for themselves, but you do all of them because the patient won’t. Sometimes there are medical or emotional causes for the problem, such as severe tiredness (fatigue) or clinical depression. If you’re not sure, get the patient to the doctor and state the problem clearly. 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, get the cancer care team to evaluate the patient. Social workers and occupational health professionals may be able to help with this.
• Encourage the patient to do self-care as much as possible.
• 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.
• Once a decision is made, accept it and move on. And if you disagree with the decision that was made about the patient’s treatment, remember that it’s the patient’s decision to make. Congratulate them for being able to make a decision.

Remember that professional help is available to you. It’s normal to feel frustrated, upset, and stressed when caring for someone with cancer. 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 there’s abuse in the family?

A diagnosis of cancer can worsen abusive behaviors in families that are already strained. The crisis of a cancer diagnosis can take a toll on both the caregiver and the patient. Taking care of yourself and getting the support you need can help you be a good, effective caregiver.

Patients are more commonly seen as victims of abuse, but what if the patient is the abuser? Again, the stresses of cancer may make your relationship more difficult. If abusive behavior starts after cancer treatment, the doctor should check to see if there are medical reasons for it. Don’t accept abuse just because the patient is sick.

There may be times of misunderstanding, tension, hurt, and anger – but not all the time. Emotions need to be expressed and accepted. Patients and caregivers should treat each other with respect, and should not fear emotional, verbal, physical, or sexual abuse. 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. Ask the doctor or nurse what problems you should call about right away, no matter what time it is. This may be a fever or new pain, or some other problem. You can also ask what 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 you should do if there are problems. Should you call your pharmacist if there are problems with the medicines? Should you go to the ER? It often seems like problems come up when the doctor’s office is closed, so be sure you have an emergency plan in place.

Get more details on dealing with symptoms and when to call the doctor in 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.

Cancer and its treatment can cause confusion and forgetfulness, and may worsen the symptoms of other conditions such as dementia. Patients can endanger themselves by forgetting 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.

For less severe problems, such as mild forgetfulness, unsteady walking, and occasional minor confusion, there may be other options. Again, tell the cancer care team about these problems to find out if there is a medical reason for them and if treatment is needed.

Sometimes the less severe problems can be managed at home if someone can stay with the patient at all times. But these problems deserve special discussion by the family. Otherwise, other family members 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 assessment can also tell you if the patient can be kept safely in the home if certain modifications are made. Ask your doctor about a referral to 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 elsewhere. They may resist leaving home. It’s 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 losing their independence. Maybe they don’t want to feel they are a burden on 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 have 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 negotiate. All of you, the patient, the family, and you, the caregiver, will need to be sure you’ve covered all options.

You’ll also need to talk about each person’s concerns. For instance, things like patient safety, convenience, finances, and the care needed should be discussed. Clear plans must be outlined. It helps to check out the physical setting and set up a timeline of patient needs. For instance, are there just 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 exploring options and setting plans in motion. 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.