Important Terms Affecting End-of-Life Decisions

When a diagnosis is bad and the prognosis perhaps even worse, the ability to cope and deal with a new set of terms and tasks can be overwhelming.

End-of-life care choices will be some of the most important decisions of a lifetime for anyone choosing to control how and where they will die. Choices made will guide and drive the matters that are most important to ensuring a peaceful, comfortable death with dignity and maximizing the quality of life up until the end.

Some of these decisions can be made long before end-of-life care ever comes into play. If these choices no longer fit they can be changed or revoked anytime. Understanding some important terms used in end-of-life decision making is vital to making appropriate choices.

Advance Directives
Advance directives or healthcare directives are general end-of-life care terms describing:

• A Healthcare Proxy or Durable Power of Attorney for Health Care (DPOAHC) is a person (such as your spouse or adult child) you appoint to act on your behalf in the event you are unable to make decisions for yourself.
• A list of instructions regarding your medical care wishes such as resuscitation (CPR) or inserting tubes i.e. to help you breath with artificial help (ventilator) or a feeding tube in the event you cannot swallow. These instructions can be as detailed as desired. Beware that advance directives can be treated differently by individual states or provinces. They do help to reduce the burden on family members.

Withdrawing Care
When everything possible has been done, the physician or nurse may mention the term “withdrawing care.” This important term means that the current course of aggressive care and treatment will end. For instance, treatments such as chemotherapy and radiation will be stopped. In advanced stages of illness or dying this can mean withdrawing various levels of life support measures such as ventilators, artificial feedings and dialysis.

What withdrawing care does NOT mean is that these measures should ever be abruptly ended and the patient sent home to die without any support systems in place. Hospice or palliative care should be brought in to help make this transition. For instance, even patients who have been on a ventilator won’t usually die immediately upon its withdrawal. They may experience some air hunger, which is a subjective experience of not being able to breathe in enough air. Comfort medications, such as low doses of morphine can help with the breathing difficulty, or Ativan to control the anxiety and panic associated with not being able to breathe adequately. These medications need to be available to ease these symptoms and allow the natural dying process to take its course.

Comfort Measures
Comfort measures is a term for the care which will be implemented to assist the patient as he moves into the next stages of dying. This may be accomplished with a variety of medications and treatments to manage such symptoms as pain, anxiety, depression, constipation or breathing difficulties. Comfort measures can also include non-medical techniques as massage, therapeutic touch and guided imagery along with spiritual and emotional support for the patient, family and caregivers.

Symptom Management
Hospice and palliative care often get the bad rap of “immediately putting patients on a morphine IV drip so they will die quickly.” Any quality hospice or palliative care organization does not do this. If this is the case for you or a loved one, you have the right to revoke and call in another team.

Over-the-counter medications may be used for mild pain in the beginning; as the pain increases, stronger medications can be used. Stronger comfort medications like Vicodin, Norco, dilaudid and morphine are commonly used for moderate to severe pain and/or advanced breathing difficulties. These medications are carefully titrated (doses increased in small increments) from very minute amounts until effective symptom management is achieved. Symptoms can often be controlled for a long time with very small doses.

For patients who might not be used to anything stronger than aspirin or ibuprofen, changing the strength (dose) of these stronger medications in small increments should be as slow as needed to achieve symptom control while maintaining the desired level of alertness for quality of life. This is just one reason why it is highly recommended to start palliative care or hospice early enough so that symptoms aren’t so far out of control and the patient is the stage of actively dying. It can take some time to reach proper symptom management.

Antidepressants, anti-anxiety medications, anti-nausea medications and bowel regimens (including medications, increased fiber and fluids, and daily habits) are useful in helping control other common end-of-life symptoms, such as depression, anxiety, nausea/vomiting and constipation or diarrhea.

End-of-life care and the dying process have so many unknowns that make it a scary experience for many people. Through knowledge and education many of these unknowns and fears can be conquered. The journey can become a more pleasant time to share the gift of spending the time left in peace and comfort in the company of family and friends.

SOURCES:
Jeanette R. Stevens RN, BSN, CCRN, CHPN, “Care Until the End.” Nurseweek West, October 10,2011.

Mayo Clinic Staff; “End of Life: Caring for a Dying Loved One.” MayoClinic.com
http://www.mayoclinic.com/health/cancer/CA00048

“Pain Control Methods and Standards of Care.” Hospice Patients Alliance. http://www.hospicepatients.org/hospic29.html