Approximately 70% of adult Americans have not completed any form of an advanced directive, often in the mistaken belief that their loved ones will know what they want when they are in a dire situation. All too often, even if an advance medical directive exists (a Durable Power of Attorney that appoints a health care agent or a written directive such as a Living Will), it may have been completed a long time ago and contains directions that are clinically irrelevant or open to interpretation. An appointed agent may live far away and be unaware of the patient’s most recent end-of-life wishes, and the family member may be without a legally recognized role. Often there is no prior discussion between the competent elder and the health care agent regarding specific end-of-life wishes, yet the agent is legally empowered and expected to engage with the health care team in identifying treatment goals.
Further complicating such decisions are family histories that include disparate religious values and a reluctance to discuss or acknowledge death. Many elderly parents do not want to burden their children with their hopes and fears about dying. What can we do to help our clients and their families make the “right” decision under such circumstances? GCMs are often called upon in the throes of such a crisis to manage, mediate, and help the family cope with end-of-life decisions in alignment with the elder’s wishes. What follows is a summary of the steps I follow when asked to help resolve end-of-life conflicts within family units
- Who has invited you into this situation, where does he/she fit into the family unit, and what do they hope you will accomplish? If the client has lost capacity, explore the content of any existing (written) advance directives and what is known about the client’s most recent end-of-life (EOL) wishes. Arrange to hear the concerns of all stakeholders with strong beliefs about what should be done. Keep the focus on what is known about the client’s wishes. Sometimes surrogate decision-makers mistakenly substitute their own EOL values for the client’s values. Similarly, family members who can’t bear to lose their loved one may insist that life-prolonging treatments be continued despite physician recommendations that palliative or comfort care be provided to the hopelessly ill and suffering client.
- If the client is currently competent, learn directly about his/her end-of-life wishes, fears, and hopes. Often elderly clients have been thinking about death for a long time but fear having a candid discussion with family members to avoid upsetting them. Adult children may have religious beliefs that are at odds with their parents’ religious views or EOL values. This may contrast with the elderly person who finds their suffering 2 unbearable, and wants to know how they can legally speed up their dying process. In this instance having a neutral party such as a GCM is a welcome opportunity to speak candidly with a non-family member who will listen without judgment.
- Make use of other resources to help resolve EOL conflicts if the client is in an institutional setting. For example, make use of institutional ethics committees and seek clinical recommendations by the health care team. Recommend and facilitate a family meeting, where all who are involved in the client’s care can come together to hear and discuss each other’s concerns with the goal of identifying a plan of care that all can accept.
- If the client is at home – arrange a family meeting or conference call where all stakeholders attend. Be sure to have available the most recent medical information and prognosis. Encourage the use of home hospice or palliative care as appropriate. Again, the goal is to have all parties at the meeting hear each other and agree on a plan of care that most faithfully represents the wishes of the client.
A case study might illustrate some of these steps. The wife of a man who had suffered several devastating strokes called Compassion & Choices because she could not get the nursing home staff to respect what she knew to be his EOL wishes. He was incapable of any purposeful response, was paralyzed and bed-bound, but often swallowed the soft food and liquids put in his mouth by an aide who spent hours each day coaxing him to swallow. He had been receiving hospice oversight for a month. His wife was his health care agent and wanted the staff to stop all life-prolonging interventions; she knew that he would not want to continue to live under such circumstances. He had been a resident of the nursing home for four years and had a brother who visited several times a year. The brother had objected to the plan to withhold life-support until he was informed that his brother was dying and was receiving hospice care; he then withdrew his objection.
The nursing home had not previously faced a request to withhold nutrition and hydration; there were concerns among the staff. His wife was invited to attend an ethics committee meeting where all staff involved in his care was present; she asked me to accompany her. I helped her to speak about her husband’s wishes and clarified the existing legal and ethical support for her role as agent in directing that all life-support, including nutrition and hydration, be withdrawn. A compromise plan was proposed that limited his oral feedings to thickened liquids, offered three times a day. The client’s wife remained concerned that her husband’s dying, and suffering were being prolonged, and his wishes were not being honored. We explored alternative placements. A week later she was able to have him transferred to a palliative care unit in a teaching hospital where 3 palliative care was provided along with the withdrawal of all feedings. He died peacefully 10 days later.
Advocare Care Management is the preeminent organization to help you with the end-of-life issues for elder care in Palm Beach, Miami-Dade, and Broward counties. We offer you complete resources to assist you in dealing with the end-of-life issues. Our team helps countless families and their relatives to effectively manage these issues. We understand the challenges you are facing and are here to help.
Reprinted from Aginglifecare.org with permission. Contact Advocare Care Management at 561-266-3498 or click here and see how we can help you.