The Veteran’s Administration conducted a study of 1500 people who had terminal diseases, were competent to answer the study questions and knew their illness was in its end-stage. The participants included patients, physicians, nurses and social workers with an average age of 57 years old and most had a diagnosis of cancer. They helped to compile an extensive list of what dying people find most important in their last days.
The following were rated as “Important” by more than 70% of the participants:
I want to live without pain.
Participants said the fear of pain was greater than the fear of dying and they want to enjoy the time they had left. They want to be assured there will be pain relief anywhere, anytime. They want to be kept clean and maintain their dignity during the dying process. They want to be free of any untoward symptoms like shortness of breath and anxiety. They want to continue to have physical touch and not die alone.
Hospice professionals are expert at managing symptoms like pain, anxiety, shortness of breath, nausea and sleeplessness and a hospice doctor and nurse are on-call 24 hours a days, 7 days a week to manage any symptoms that arise. Dignity, including being clean and comfortable, are priorities in hospice care as is attending to the patient in the active dying phase.
I want to make decisions about my care.
Participants expressed a need for involvement. They do not want to spoken about while they are present in the room without being included. They do not want the truth spared when they have questions. They want to take charge of their care to the very end and have all options explained to them. They want to receive care from their trusted personal physician and have a nurse with whom they feel comfortable. They want to know that professionals caring for them are comfortable taking about death and dying so they, too, may talk about their own mortality.
The Medicare Hospice Benefit mandates that the patient be in control of his/her own care with the inclusion of the loved ones. All decisions are made by the patient/family with the guidance of hospice professionals. All hospice staff members and volunteers are educated in depth about death and dying and are comfortable discussing sensitive items with patients and families.
Tell me what to expect.
Participants wanted to be told the truth in answer to their questions. As part of controlling their own destiny, they want to be as prepared as possible and be able to discuss these preparations. They want professionals to be proactive in managing any symptoms that may occur. Most participants had a preference for having care, treatments and expectations in writing.
The hospice staff works closely with the patient/family and other hospice team members to predict and prevent symptoms that may occur. A home-chart is left with the patient with educational materials on what to expect, how to physically care for a patient and medical information specific to each patient.
I want to find meaning to my life and my living/dying.
Participants said they want to attend to relationships and resolve any unfinished business with family and friends. They want the time to review their lives and remember their personal accomplishments. They want to share time with close friends and say goodbye to the important people in their lives. They want to practice their faith and continue to engage in important activities.
Hospice staff members, especially social workers and chaplains, assist patients in resolution of personal significant issues and life reviews. Volunteers often help patients write or record a life review. Patients continue to live their lives and participate in their activities knowing the hospice staff is available at any time.
I want to be seen as a whole person, not a disease.
Participants reported that they want to be seen as a person with relationships, work history, occasions of significant importance and with humor. They want to be treated as a person with an end-stage disease and not just the disease itself. They want professionals to care for them from a whole-person perspective and gain a sense of feeling prepared to die.
The hospice team caring for a patient is made up of hospice staff but also the patient and family members. Each individual has a unique perspective in caring for the patient, making the care holistic and not disease specific.
I need to help my loved ones.
Participants expressed a strong desire to believe their loved ones were prepared for the death. They want to have their financial affairs in order in an effort to leave the loved ones as unburdened as possible. They want the presence of family and friends in the final days and the loved ones to share in care, teaching and the knowledge of expectations.
Hospice cares for the patient but also provides support to the family in whatever way that helps them most. Hospice encourages patients to be surrounded by loved ones and to continue to live until they die. Upon the patient’s death, family members are provided with bereavement services and support to help them through the first difficult year without their loved one.