Making sure a seriously ill loved one gets the very best care can be extremely difficult. How do you know what care is best? How do you make treatment decisions for someone who is unable to do so? When is medical care either too little or too much? When is it all right to discontinue certain treatments? How can the family work with the healthcare team most effectively? How can family caregivers manage situations like this?
- Consider the big picture first. What does your loved one value most in life?
- Find out the specifics. Ask the physician: Exactly what causes these changes? Are there several serious illnesses at work? What is the expected course for people with these types of illnesses? Are there treatments that can change the course of the disease? What lies ahead – physically, mentally, and in terms of troubling symptoms? Is death the usual outcome? What treatment goals are not achievable? (For instance, a healthy weight gain is unlikely in advanced illness.)
- Is there an advance directive? A Living Will outlines what individuals would want in case they are unable to make healthcare decisions when they are needed. A Durable Power of Attorney for Healthcare Decision-Making establishes who will make decisions when patients are unable to do so. If either document exists, has your family discussed what it says? Has your loved one said what treatments he or she would – or would not– want if gravely ill? If you have no document or discussion to guide you, consider what you know of your loved one’s values and philosophy of life.
- What would your loved one say are the main goals for care at this stage of illness? How important are life-prolonging measures, especially if these measures would result in discomfort? How important is medication to eliminate pain, even if it causes sleepiness? Is it important to be home, to have family around?
- Is all the care coordinated? Is there more than one doctor or healthcare team involved? You should expect, but not assume, that healthcare professionals communicate with each other to provide seamless care and avoid unnecessary tests or treatments – ask them! If you believe that coordination is lacking, request a meeting with all involved to be sure everyone is on the same page.
- What should I expect from the healthcare team? Expect gentle honesty. Expect to be kept fully informed. Expect to be included in setting goals and planning care. Expect that treatment recommendations are consistent with your loved one’s values and goals, and that you are not just given a menu of options.
- How can family caregivers best interact with professional caregivers? Don’t hesitate to ask questions. Some family members will want to provide direct care, whether their loved one is at home or in a medical facility; ask the nurse to teach you how to give care safely and comfortably. If you are worried about the care your loved one receives, speak up about those concerns. The majority of healthcare professionals want what is best for your family member, just as you do. Request a meeting with the team or with a supervisor if concerns persist.
- What more can I do? It’s easy to feel helpless when someone we love gets progressively sicker, but do not underestimate the power of your loving presence. Loneliness can be devastating, and family members provide great solace. Talk with, not over or around, your loved one about how he or she is loved and valued. When possible, share enjoyable activities such as reminiscing or listening to favorite music. Touch is important to many: hugs, holding hands, massaging feet or applying lotion to dry skin (under the direction of the nurse) may provide comfort and support. Family members know their loved one best. Tell health professionals what you see, especially if pain or other symptoms don’t seem to be controlled.
It May Help to Review What Healthcare Professionals and Families Can Do:
- Physician: Informs the family of the patient’s medical condition and explains treatment recommendations, including expected benefits and side effects; explains what would happen without the treatment; orders tests, medications and treatments.
- Nurse: Carries out physician orders; monitors the patient and reports changes to physician; provides direct care and supervises the care provided by nursing assistants; coordinates with other members of the care team; updates family about the patient’s condition; teaches caregivers how to provide care safely and comfortably.
- Nursing Assistant: Provides personal care (bathing, toileting, turning, feeding, etc.) as directed by the nurse; takes vital signs (blood pressure, temperature and pulse) if ordered; reports changes to the nurse.
- Social Worker: Helps the patient and family cope with the illness; provides some counseling for emotional distress; helps with practical arrangements (insurance issues, funeral arrangements, transfers to other facilities).
- Chaplain: Helps the patient and family with spiritual needs; offers prayer as requested; coordinates with the others in the patient’s faith community; helps with funeral planning.
- Therapists (such as Occupational and Physical Therapists; Speech Language Pathologists): Help to maintain or improve patient functioning, when possible; teach family caregivers safe ways to lift, turn or transfer the patient.
- Dietitian: Evaluates and recommends the best food for the patient, considering nutritional needs and swallowing concerns.
- Volunteers (Available in Hospice Programs): Offer companionship to the patient; run errands for the family; provide direct patient care if specially trained.
- Family Members:
- Participate in planning care and setting goals; you know what is most important to the patient.
- Ask questions about your loved one’s condition. Ask if all providers are communicating with each other; request family meetings when you need to clarify goals and improve coordination.
- Inform the care team about any change in symptoms.
- As the nurse taught you, provide direct patient care. Not everyone is willing or able to do so, but for many, it is an important way of caring.
- Talk to your loved one, even if he or she seems unresponsive. Reinforce dignity and express affection. Include your loved one in conversations about day-to-day events.
- Engage in activities that your loved one has enjoyed. Reminisce, pray, sing.
- Touch! Hug, hold hands, massage.
Source: American Hospice Foundation: americanhospice.org