By Cheryl Arenella MD, MPH
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? We hope this article helps you be an effective patient advocate, particularly if your family member is no longer able to make informed choices about care options.
Mother and daughter:
Mildred is a 96-year-old woman with advanced dementia who now lives in a long-term care facility. Confined to bed, she is unable to communicate meaningfully, or to dress, bathe or feed herself. She has no control of her bowel and bladder (incontinence), has difficulty swallowing and often chokes when being fed.
Mildred’s daughter, Charlotte, previously cared for her mother at home. Daughter Mary and son Jack are less involved, due to distance and the fact that they are no longer recognized.
Mildred was hospitalized three times in the past year, first for a fractured hip, then twice for pneumonia. Charlotte is concerned because her mother is losing weight and developing bedsores. Mildred cries out in pain when the nurses change her dressings, frequently chokes, and is short of breath.
At the recommendation of her physician, Mildred now receives hospice care, and interdisciplinary team members – a nurse, social worker, home health aide and chaplain – visit her regularly in the nursing home, coordinating their care with the nursing home staff.
Charlotte is unhappy with her mother’s care. She blames the nursing home and hospice for the bedsores and weight loss. She is critical of medications to control pain, congestion and shortness of breath; she believes they make her mother too sleepy. She would like her mother to have further tests to check for infection.
Charlotte talks about transferring her mother to the hospital “for better care.” She asks why her mother doesn’t have a feeding tube in her stomach for more nutrition. Even though Mildred has very advanced dementia, Charlotte doesn’t want to give up on her, and Charlotte’s siblings defer to her, saying she “knows mother best.”
This example shows a family caregiver’s distress. 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.
What happened to Mildred and her family?
After a meeting to hear Charlotte’s concerns, the hospice team requested a care-planning meeting with the nursing home staff and Charlotte. Asked to share her understanding of her mother’s illness, Charlotte said that her mother has dementia, a disease of the brain that took away her ability to think clearly, but Charlotte did not think of dementia as a terminal illness. The physician and the healthcare team explained that dementia is indeed a progressive and ultimately fatal illness that affects the brain and the body, which is why Mildred cannot move and has difficulty swallowing.
Charlotte asked about placing a tube into Mildred’s stomach to feed her more, but the team explained there is no evidence that this would help, and could expose Mildred to complications. The nursing home staff reminded Charlotte that each time her mother was transferred to the hospital, she became delirious and upset, only to return in worse condition.
The physician explained that, in advanced dementia, irreversible weight loss is common, as are non-healing skin ulcers – “skin failure.” Pneumonia recurs because swallowing muscles break down, so mouth contents slip into the windpipe and lungs, causing infection. This may occur even when the person does not take food or drink by mouth.
The team asked Charlotte about her mother’s philosophy of life – had there been any discussions about her wishes if she became terminally ill? Mildred never completed an advance directive, but Charlotte knew that her mother treasured her relationship with her children, and when Mildred saw what her husband went through before he died of advanced heart failure – including a feeding tube and a ventilator – she said she would not want to have her life prolonged like that, “on machines.” Charlotte knew her mother would not want to suffer from pain or shortness of breath, and that being fully awake was less important now that she could not communicate.
Charlotte and the healthcare team agreed to continue medications for comfort, and Charlotte was assured her mother would be carefully fed and offered food that was easier to swallow. She understood that pneumonia could likely recur with increasing breathing difficulty and would be harder to treat with antibiotics, so Charlotte decided against future hospitalization. They agreed to monitor Mildred for signs of urinary infection and treat with antibiotics should this occur, since urinary infections commonly cause discomfort. The nurse described how Mildred was already receiving attentive care for the bedsores and was on a special mattress to reduce pressure on her skin.
Charlotte talked with the social worker about her feeling of helplessness. She recognized her need to regain some control when she felt powerless. The social worker and chaplain discussed how Charlotte could contribute to her mother’s care through presence, reciting her mother’s favorite prayers, playing favorite music, stroking her mother’s hand, and telling her mother how much she is loved.
Mildred died peacefully a week after this meeting. Her children were at her bedside, along with the facility’s nurse and nursing assistant who cared for her with compassion. Since hospice services include the offer of bereavement care, the hospice kept in touch with Mildred’s children to help them adjust to their mother’s death.
It helps to review what healthcare professionals and families can do:
| Health Professionals’ Roles | |
| 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 |
| Dietician | 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 |
| Your Role as Family Caregiver |
| 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. |
About the author: Dr. Cheryl Arenella is a healthcare consultant for programs focused on improving end-of-life care. She has over 20 years of experience in the field of hospice and palliative medicine. A former trustee of the American Board of Hospice and Palliative Medicine, she served for many years as a medical director for a large Medicare-certified hospice, where she provided medical oversight, direct patient care and administrative program support.
American Hospice Foundation 