Helping Create a Good Death

End of life patients need and want more than pain and symptom management. These patients have indicated that being treated with dignity by a provider who knows them as a person, with whom they have a trusting relationship and can talk about death, dying and their fears, are important relationship factors that contribute to a good death.

The fact is that patients highly value relationships at this critical time. They need caregivers for support, education and reassurance. Research has shown that patients and family members value feeling prepared to die, having time to make the necessary preparations for themselves as well as their families, and being at peace with God. This includes having time to say goodbye to important people, resolving unfinished business and reflecting on their accomplishments in life.

These tasks are not easily or quickly completed. Opening the end of life discussion is difficult. Patient and family readiness factors often delay these conversations. Ideally, these discussions occur over a period of time in mid-to-late life, particularly with patients suffering from chronic conditions associated with high mortality rates. However, families are often faced with these decisions in acute care circumstances. A family’s lack of knowledge about hospice, denial of terminal state, over-estimating survival rates, association of hospice with death, and desire for active treatment are often present in these cases. Feelings of doubt, conflict, guilt and disagreement can further complicate these discussions.

Other barriers to this dialog may be related to physician discomfort about making an end of life prognosis, fears of being mistakenly regarded as “giving up” and difficulty in accurately predicting life expectancy. External complications such as feeling pressured by our cure-oriented medical culture and lack of a relationship with hospice providers can also exist. Consequently, patients, families and physicians often wait too long to talk about the inevitable.

For most physicians, such prolonged discussions, occurring over days or weeks, are very time consuming and emotionally draining. Each physician must decide, in the context of their practice, if it is reasonable to expect that they will engage in all of these discussions with each of his or her patients. This is not a “yes” or “no” decision, but one that depends on a variety of unpredictable factors. Hence, this decision should be made with each individual patient, based on their life and medical conditions, in conjunction with the family and physician’s circumstances.

For those cases in which a physician chooses to proceed, say with a hospice talk, there are numerous guidelines. VandeKieft summarized these guidelines in the American Family Physician (2001) with the A, B, C, D, E mnemonic, which has been helpful in breaking bad news:

• Advance preparation: arrange adequate time and privacy, confirm medical facts, review relevant clinical data, and emotionally prepare for the encounter.

• Build a therapeutic relationship: identify patient preferences regarding the disclosure of bad news.

• Communicate well: determine the patient’s knowledge and understanding of the situation, proceed at the patient’s pace, avoid medical jargon or euphemisms, allow for silence and tears, and answer questions.

• Deal with patient and family reactions: assess and respond to emotional reactions, questions and needs.

• Encourage/validate emotions: listen quietly, attentively and affirm their emotions with empathic statements.

In some complex cases, a prudent approach might be to enlist the aid of the hospice social worker, chaplain or other members of the multidisciplinary treatment team. Alternatively, if the patient is in the hospital or at home, a trained mental health professional who specializes in talk therapy, such as a licensed counselor, social worker or psychologist, could be consulted to provide collaborative care to help work through these complex issues. Mental health providers are well suited to assist physicians by identifying patient and family resistance to and readiness for hospice and helping patients navigate these and other life changes. They can also provide individual and family therapy, identify additional community resources (e.g., spiritual support, hospice liaison workers, etc.), while addressing the patient’s anxiety, depression or other mental health concerns.

As we move toward integrated care and accountable care organizations, linkages between hospice programs, hospitals, nursing homes and medical homes will become stronger. Multidisciplinary teams that include mental health practitioners will hopefully become the norm. This will facilitate early intervention, more efficient and humane care that can significantly contribute to palliative, compassionate care at the end of life. Creating a good death requires a supportive team who can assist the physician, patient and family through these emotionally challenging times.

Edward A. Wise, PhD, is founder and president of Mental Health Resources, PLLC. He is a clinical psychologist who has been named a Distinguished Practitioner in the National Academies of Practice, a Fellow of the American Psychological Assoc., Fellow of Society for Personality Assessment, Member of the National Register of Health Service Providers in Psychology and has received the American Psychological Association Award for Distinguished Contributions to Independent Practice and the University of Wyoming Outstanding Alumnus Award. He also serves as a consulting editor for numerous mental health journals. He can be reached at Wise@AMHRMemphis.com. 

Tags:

Bookmark:

Digg

Facebook

Technorati

Newsvine

Google

Related: