Making Decisions About Advanced Care Planning: Early is Better Than too Late

One of the hardest decisions chronically ill patients and their families face is one regarding their preferences for care as they approach end of life. It can be difficult for them to determine if medical treatment should be continues and if so, for what length of time. Other concerns that often cloud decision-making include the uncertainty of the treatment's success, the patient's overall prognosis, and their quality of life with or without treatment. Many patients rely on the guidance of their physicians to help make the right choice for them.

It's important to have open and ongoing discussions about end of life care with patients and families because, as the patient's condition changes, so might their decisions. By getting realistic information regarding prognosis, treatment options, and how the progression of the illness will impact daily activities, patients have a clearer understanding about what lies ahead and can make their decisions accordingly. Designating surrogate decision makers is also encouraged. Should the patient become incapacitated and not be able to communicate his or her wishes, a surrogate who has maintained close communication with them will be able to speak on their behalf.

Managing Symptoms of Agitation and Delirium at End of Life

Agitation and even delirium can be very troubling symptoms for patients and their families, as well as for the medical professionals who care for these patients. According to a report in the Journal of the American Medical Association, delirium is “a syndrome composed of disturbances of consciousness, attention, and cognition, with abrupt onset and fluctuating course.” The report claims that nearly 85% of terminally ill patients experience delirium in their final stages of life. In many cases these patients aren’t able to communicate,  so other symptoms (including pain) may be treated inappropriately or go untreated altogether.

There are ways to both help prevent the onset of delirium, and to treat it if it occurs, in many patients.  Both health care professionals and family members can play a role in minimizing symptoms. For example, medical staff should make sure the patient has optimal mobility by using catheters, IVs and restraints as little as possible. The patient should get the right amount of nutrition and fluids as well as be monitored for proper functioning of the bladder and bowels. And if the patient needs hearing aids or glasses, they should be provided. In addition, medication times should be scheduled so that they don’t interfere with sleep time, and any pain felt by the patient needs to be controlled.

Friends and family can help minimize delirium and agitation by placing familiar items in the patient’s room, such as family photos, a clock and other objects that will help with orientation. Soothing relaxation devices including music, massage and warm drinks, along with a quiet atmosphere, can help with sleep and ultimately reduce symptoms of delirium as well.

Referring to End of Life Care does not mean abandonment.

Primary Physicians - Attendings - add a different emphasis to their patients’ care when they refer them to End of Life Caregivers. However, although often less involved with subsequent care, Attendings aren’t any less important to their patients. The length of time and intensity of care between Primary Physician and patient creates strong bonds, and there can be a strong sense of loss in both directions if this referral is seen as parting ways. Center for Hospice Care is very good about keeping Primary Physicians aware of any patient changes, and is very supportive of patients continuing supportive visits to their Attending if they wish to do so.  In fact, we encourage conscious efforts by Attending physicians and nurses to remain available even after a patient transitions to end of life care. A phone call or visit, along with conversations regarding current care, can go a long way in preventing feelings of abandonment by patient or Primary Physician.

What's so great about hospice care?

That's a really good question with a plethora of positive responses. The Journal of Pain and Symptom Management published a study that analyzed the responses of nearly 117,000 family members whose loved ones died while in hospice care in the U.S. and according to them, hospice services were rated highly for each of the following reasons.

1. Improving the quality of care, and sometimes even the quality of life, for both patients and families as the patients approach EOL.

2. Communication. The study showed hospice services were excellent when patients and families were kept informed on a regular basis and also when clear expectations on the approach of EOL were shared.

3. Emotional support and a Team that patients and families can rely on "24/7/365". The study reported high grades from patients and families for the hospice team, and the ability to rely on the team for the correct and best possible coordination of care.

4. Pain and other symptom control. The study showed families rated hospice care as excellent and felt confident that it was providing the right amount of pain control and overall support to their loved one.

These benefits might assist you or your loved one, too. Please call us at 574-243-3100, or 1-800-HOSPICE


Gregory C. Gifford, MD JD
Chief Medical Officer
Diplomate ABEM
Board Certified in Hospice
and Palliative Medicine

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