A great article by April Goode of AutumnBridge Hospice
Those of us who are caring for them must do what we can to help them to go on living while they are dying.
When people are dying, they need honest, accurate information about their disease. Numerous studies indicate that people want to know the truth about their prognosis, be it good or bad. As healthcare professionals, we have an ethical obligation to tell the truth to patients. This protects their autonomy and allows them to make informed decisions about their care. Some patients may have cultural issues with discussing death and dying. We need to ask these patients to designate a third-party who can hear the bad news and make decisions on their behalf.
People who are dying may need someone to confide in—someone who will listen without judging. They may need to share their fears and their hopes, or they may want to review their life stories. They may need to confess things they’ve never shared with anyone else. They need someone who will listen, then affirm who they are, and validate the value in their lives.
People who are dying may need to settle unfinished business. They may need to ask forgiveness of those they’ve hurt or express their true feelings to those who’ve hurt them. Settling differences in relationships helps bring closure for the dying as well as the other people involved.
In addition to settling unfinished business in relationships, dying patients may also need a stand-in to finish projects or fulfill promises. A grandmother may want someone to finish sewing a quilt for a granddaughter. Family photos may need to be organized or heirlooms distributed. A parent may need to know that a young child will be cared for. The dying may want to know that someone will finish the things that they can no longer do themselves.
The dying may need help with practical matters like handling finances, writing wills or advance directives, and making funeral arrangements. They also may need help with caring for their home and yard, running errands, preparing meals, or getting to doctor appointments.
Dying patients need medical care that focuses on keeping them comfortable and relieving pain. They need medical professionals with experience in caring for dying patients. They need medical care brought to their home, where they can continue their lives surrounded by family and friends.
When patients reach their final days, there may come a time when they become too ill to express their own desires for their care. This is when they may need a person to advocate on their behalf. They need a trusted friend or family member who will advocate for their dignity and make medical decisions based on what the patient would want for themselves.
Dying patients often need help with spiritual concerns. The dying may go through a time when they question the meaning of life and their own spiritual beliefs. They need a spiritual counselor who will listen to their ideas and honor their desires. They may need help with conducting spiritual rituals at home.
Hospice care can meet each of these basic needs for the dying. The hospice interdisciplinary team provides medical care in the home, emotional and spiritual support, and help with practical matters. Hospice professionals strive to provide honest, accurate information on patients’ health so that patients and families can make the best possible decisions about medical care. Hospice staff and volunteers take the time to listen and often facilitate patients in settling unfinished business.
While meeting these basic needs, the hospice team also acknowledges that each dying patient has individual needs and desires that they want to fulfill at the end of life. The hospice team looks for ways to fulfill these final wishes.
Often, instead of worrying about what to say to or what to do for dying patients, we simply need to ask them what they want us to do. Doing so gives us the opportunity to do what we can to help them go on living.