It may seem as though there is never a “good time” to talk about death and dying. Oftentimes loved ones are uncomfortable discussing the topic – particularly if they are relatively healthy. Although these conversations are often difficult to have, they are vitally important. We need not wait for a tragedy before anticipating what rational decisions will need to be made in time of crisis. We must have the conversation before the crisis.
With so much in the news about our aging population and end-of-life care, people are beginning to value a good death as much as they do a long life. While some families are able to tackle the issues that arise from terminal disease … others cannot even think about what will happen to their loved one. Talking before a crisis can help you and your loved ones prepare for any difficult decisions related to care near the end of life.
Most people have strong ideas about the ways they wish to face the death, yet often, their loved ones or their physicians do not know these choices. Too often, the conversations don’t take place until there is no time left for honest discussion, reflection and planning. If you can begin to talk about death when people are healthy, you will have made a significant contribution to your family and discover important information for yourself.
While conversations about end-of-life choices can be difficult to begin, it is vital to communicate about these issues before a crisis occurs. It is important to promote conversation about values and preferences regarding illness, medicine and dying, and to help your loved one decide on who should be a surrogate decision maker if he or she cannot decide or speak for him or herself.
You may meet with reluctance to starting the planning process. You cannot make someone do what he or she is not ready or willing to do, but you can plant the seeds by pointing out that there are real advantages to early advance planning and potential dire consequences to putting off such planning.
Communication is the single most important step in advance care planning. When a loved one communicates their wishes ahead of time, it decreases the chance of future conflict, decreases the potential for ethical dilemmas and takes the burden off the family. The sense of control and peace of mind that this process fosters in the individual and the reduction of anxiety of the surrogate decision maker are important benefits.
Look for hidden cues: … some people will initiate the discussion by asking questions about end-of-life treatments, or sending cues that they are ready to discuss end –of-life care. People who discuss the death of a friend or relative, wanting to die, or who are asking questions about hospice care may be attempting to open a dialogue about their own end-of-life treatment.
Personal experience, current events and art and culture can be trigger points for conversations. If you want to start the conversation …think about some of the issues and then watch for opportunity triggers:
- Death of a friend or colleague
- Newspaper articles about illness/funerals
- Movies/TV shows
- Dramatic Plays
- Family occasions
- Magazines & Books
Sometimes sharing your own personal concerns, values, spiritual beliefs or views about what makes life worth living can be a helpful conversation starter. Communicating includes understanding hopes and fears around illness and dying. Encourage the conversation through open-ended questions or empathetic responses when inquiring. Conversations about end-of-life issues are emotionally charged. Paying attention to the feelings associated with the content of the conversation, is key to resolving communication difficulties.
Advance Care Planning
Advance Care planning and decision-making can make a critical difference in the lives of both patients and caregivers, either in emergency situations or when facing end-of-life situations. Advance care planning aims at being better prepared for unknown dilemmas ahead.
Advance care planning can be guided by Advance directives. Advance directive is a general term used to describe two types of documents, living wills and medical powers of attorney. Living Wills (sometimes called medical directives) are written instructions for care in the event that a person is not able to make medical decisions for him or herself. A medical power of attorney (sometimes called a health care power of attorney) is a document that appoints a particular person (health care proxy/agent or surrogate) to make health care decisions for a patient who is unable to do so for him-or herself.
Although Advance directive policies are determined primarily at the state level, in 1991, Congress enacted the Patient Self –Determination Act (PSDA). This act requires that all health care facilities receiving Medicare or Medicaid reimbursements must inform patients of their rights to make choices about the treatment they receive and to prepare advance directives. Advance directives are not only focused on what treatments one does not want … they are equally applicable and viable to indicate all of the treatments that one does want.
Over the last 15 years, a body of research has developed around the question of whether advance directives really work – do they have impact on the way decisions are made or carried out? Two recent comprehensive literature reviews offer key insights regarding advance care planning:
- Most people never complete an advance directive;
- Advance care planning has to reflect changing preferences and circumstances; patient’s preferences change over the course of their illness.
- When clinicians and families understand and agree with a patient’s preferences and prognosis, patient’s are more likely to experience their preferred outcomes;
- Physical and psychosocial support for patients and their families is needed and can improve communication and decision-making among clinicians, patients and families;
- Often, when an advance directive has been completed, health care providers don’t know about it, and even if providers know an advance directive exists, it is not in the medical record where it is needed.
Despite the mixed reviews, advance directives remain an important legal tool for persons to state their preferences and name a surrogate decision maker, in case they become mentally incapacitated later in life.
It is critical to keep in mind that a living will, advance directive and health care planning are not guarantees that your wishes will be followed. However, without them the chances are greater that your wishes will not be known or followed.
Advance Directives are the best tools we have at this point in our society and even though they require considerable work, it will be well worth it if it can save you and your family anguish. Even more important is to appoint a health care surrogate to speak for you if/when you are incapacitated.
Websites that offer advance directives are readily available in an Internet search. Most state Attorney General websites offer free downloadable forms. You can find links to them through the National Association of Attorney’s General: http://www.naag.org/issues/issue-endoflife.php.
It is not within your power to overcome all the barriers of the health care system that hinder the proper execution of the dying persons wishes, but you have an opportunity to help loved ones overcome the personal barriers that prevent them from completing advance directives.
It is hard to face losing a loved one – especially during a long steady decline of a disease or the frailty of old age. If we start planning for illness before it occurs we will/can take some stigma away from how we choose to live with the disease.
Always difficult, the end-of-life can be amazingly rich, filled with learning, insight and love .. possible to the last breathe… Talking before the crisis makes a rich and meaningful ending more likely.
About the Author
Judith Peres is a clinical social worker with postgraduate training in cognitive/behavioral therapy and mind/body health. She has extensive experience in stress management, grief work, aging and palliative care. Her career spans over three decades in both Medicare health policy and direct clinical work. Her clinical practice includes Employee Assistance Program work for the Sheppard Pratt Institute in Baltimore, Maryland and work as both a psychotherapist and mind/body specialist for Kaiser Permanente. She can be reached at firstname.lastname@example.org