What does a care manager do after a terminal diagnosis has been given by a physician and the older person and their aging family have moved on to the ” Acute Phase”?
The acute phase of death and dying begins at the time of diagnosis. The person has heard their terminal diagnosis from a doctor or other medical staff person and is then forced to try and understand their situation. Many people can’t absorb or understand their diagnosis the first time they hear it.
Shock is often the first reaction. People are immobilized and temporarily shut down. This makes concentration and listening next to impossible. They may also want to avoid acknowledging the illness. People need time to process such news.
The care manager can help clients cope by encouraging them to talk things out. Unless a decision needs to be made immediately, decision making should be postponed until there has been some time to talk things through. If the family caregiver’s inability to perform family tasks interferes with timely medical treatment, then the care manager needs to intervene.They can organize other family to share care or help hire private duty home health care if this is affordable. The care manager can also do a mixture of both.
Ultimately decisions must be made regarding his or her medical care and available treatment options. Once treatment begins, the reality of the illness becomes a part of the family’s life, and adjustments and accommodations need to be made. At this point, the family is hopeful that a cure can be found.
Care Manager tasks:
- Arrange for private duty home care if needed and approved
- Arrange for durable medical equipment, if needed
- Coordinate and facilitate family meetings about sharing care if needed
- Visit the older client on a regular basis to monitor their symptoms, care, and support and update medication list and care plan
- Send weekly monthly report on the status of the client to all family members making them so they all know the status of the elder’s care and the arc of dying.
- Schedule medical appointments for the client so they can see the various doctors
- Drive client to medical appointments to advocate take notes and make list questions to ask to best use those 10 minutes of a typical doctor’s visit
- Assist family, in continuing to get questions answered by health care professionals about next steps after terminal diagnosis
- Provide a “Whole Family Approach” to centrally update all family members and meet their emotional needs around the older person now that a terminal diagnosis- perhaps their worst fear is here
- Assist in compiling and organizing documents needed for advance care planning.
Gwendolyn LAZO Harris MA, CT, Seniors at Home, San Francisco and Diane LeVan MA both highly expert care managers, created a seminal chapter on Palliative Care and End of Life Care Manager in my book Care Manager’s Working With the Aging Family