What is a Care Plan?
It is important to have a written plan of care for your loved one.
A Care Plan lays out what needs to be done to manage the health and well-being of the cancer patient. Unlike the doctor’s “plan of care,” the Care Plan addresses non-medical issues. A Care Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver burnout and stress by having a clear plan.
How do we make a Care Plan?
To make a Care Plan:
- Include the patient
Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable. What help is needed?
- Pull your home team together
Make a list of everyone who wants to help, can help, and should help - including family members, close friends, health professionals, home care workers, volunteers from church, and others in the community.
- Take stock of the situation
Remember that the level of care needed by the patient can change. Make a list of all the components of the patient’s care: appointments, treatments, medications, and types of assistance needed. The person with cancer may only need help for brief periods of time, like after surgery or during chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes. Other patients only need help a few days a week, such as around the days of treatment when side effects are most obvious.
- Have a family meeting
Learn more about planning a family meeting.
- Make the Care Plan
Once you have put together your care team, and considered the patient’s needs, it is time to sit down with all the players and put your Care Plan together. The written Plan should include:
- Contact information (phone numbers, websites, addresses) for all the patient’s healthcare providers and care team members
- A care schedule of needed appointments and treatments
- A list of assigned tasks (for example, “Laundry: Rebecca, Tuesday evenings”)
- A list of the patient's medications and instructions for administration
- A care schedule of when medications need to be refilled
- List of areas for patient assistance, such as with physical function
- Other important medical information
- Organizing medical records
- Instructions for what to do in an emergency
- Emergency numbers
- Take action
Make sure everyone involved has a copy of the Care Plan. Check-in with each other regularly to make sure things are getting done. There should be one person who coordinates the Care Plan. This does not mean that person has to do everything -just that he or she is responsible for seeing to it that those tasks are done or changed as needed. As things change, be sure to update the Care Plan. Periodic family meetings may be helpful.
What areas do we need to think about when making a Care Plan?
You’ll want to look at how the patient is doing in these areas:
- Physical health & function
- Medication receipt and administration
- Mental and emotional health
- Everyday activities of daily living (e.g. bathing, meals, etc.)
- Home safety
- Finances and medical bills
- Lifestyle and social activities
Physical health & function
Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters, or other medical equipment?
Be sure to address the following areas on the care plan:
- A list of activities the patient will need assistance with. Also include any assistive devices needed, such as a cane, walker, or wheelchair.
- If the patient needs assistance with activities of daily living such as eating, bathing, or grooming, ask them about their preference for utilizing help. Note this on the care plan. For example, be sure to ask them what time they like to eat breakfast, lunch, or dinner or if they like or dislike any particular food. List food allergies.
- Note if the patient is continent or incontinent and how often the patient should be checked if incontinent.
- Be sure to include any physical or occupational therapy in the care plan and note whether this therapy takes place in the home or at a clinic.
- Whether the patient needs assistance in handling finances and banking.
- Whether assistance is needed with grocery shopping or preparing meals. Whether the patient receives meals from outside sources such as Meals on Wheels.
Does he or she have other diseases that need to be managed, like diabetes, high blood pressure, arthritis, or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?
It is important to have an updated list of medications, including the time to take, dosage, frequency, route of administration (oral versus injection), and the purpose and side effects associated with the medication.
Also include proper storage, handling, and disposal instructions.
Update the Care Plan frequently to include any changes to medications.
Have the name and number of the pharmacy and whether or not the patient uses a specialty pharmacy.
Include any known medication allergies.
Mental and emotional health
Does the patient have any mental health issues like depression, anxiety or delirium that lasts more than two weeks? Should he or she be seen by a mental healthcare professional?
Everyday activities of daily living
Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortably? Can he or she dress, bathe, shave, brush teeth, wash hair, use the toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, do yard work, and/or drive safely? Does the patient have any eating issues?
Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)
Be sure to note any household chores that need to be completed and give specific details of when these chores should be completed. For example, laundry on Mondays or vacuuming on Saturdays.
Include the patient to discuss their regular schedule of housework and/or yard work.
Include any care for household pets, such as walking the dog or feeding the cat.
Have the names and numbers of repairmen should something in the household malfunction, such as the furnace or plumbing.
Finances and medical bills
Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored? Who handles the medical expenses and bills?
What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance, or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered? Ensure that co-pays are considered when seeking care. Pay care bills and coordinate insurance concerns and issues.
Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Does the primary caregiver and/or caregiving team have access to these?
Interests & lifestyle
What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services? Take to social events such as concerts, etc.
Supplies and equipment
Know the supplies and equipment needs of the patient and include in the Care Plan. The patient may need supplies for dressing changes following surgery or have wounds that require care.
The patient may have a bedside commode, hospital bed, a walker/cane/or wheelchair, oxygen, feeding tubes, or need tracheostomy care supplies.
Know where the supplies and equipment come from, and the number to contact in the event you need to reorder supplies or if there is an issue with equipment.
Be sure to include on the Care Plan any maintenance on equipment and how to operate or use equipment safely.
- American Cancer Society. (nd). What a Cancer Caregiver Does Retrieved from http://www.cancer.org/acs/groups/cid/documents/webcontent/acspc-027595-… Cancer.net. (2019).
- Caregiving at Home. Retrieved from https://www.cancer.net/coping-with-cancer/caring-loved-one/caregiving-h…
- Dana-Farber Cancer Institute. (nd). How to Create a Caregiving Plan. Retrieved from https://www.dana-farber.org/legacy/uploadedFiles/Library/adult-care/tre…
- Kim, Y., Carver, C.S. (2019). Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship. Journal of Cancer Survivorship, 13(5), 749-758. DOI: 10.1007/s11764-019-00794-6