(Editor’s note: November is National Hospice and Palliative Care Month. This is the second article of a three-part series that focuses on the differences between community palliative care and hospice and the importance of end-of-life conversations and an effective community palliative care program in West Virginia.)
The experience of death shapes the final moments of our own life. It also shapes the experience and remains in our memories.
“I’ll never forget what his last words were,” said Del. Amy Summers about her brother who died in the hospital from melanoma at the age of 39. “He said, ‘I want to go home.’ That has stuck in my mind and I hear him saying that.”
Summers’ brother’s dying wish to go home is what many West Virginians would choose if a physician diagnosed them with a terminal illness and they could plan where they would like to die. According to a statewide study, over three in four (77%) people said they would like to die in their home. Only seven percent wanted to die in the hospital.
“We all feel more comfortable at home,” said Chris Zinn, executive director for the Hospice Council of West Virginia. “At home the patient and family are in control of the situation and can get the support they need through palliative care and hospice.”
Being in control at life’s end is important. The survey also found that most residents (72%) would prefer to live a shorter time to avoid suffering and machines than to be kept alive as long as possible even if it meant suffering (15%).
“Completing advance directives is one way of helping loved ones know what would be important to patients in their dying months and days,” said Dr. Alvin Moss, director of the West Virginia Center for End-of-Life Care. “These directives allow patients to convey their preferences for end-of-life treatment when decision-making capacity is impaired. Such preferences can include whether one would want life support in the event of a life-threatening situation.”
The West Virginia Center for End-of-Life Care conducted a statewide survey as part of the Community Palliative initiative to examine West Virginians’ knowledge of and attitudes regarding palliative care using a grant awarded by the Claude Worthington Benedum Foundation with assistance from the West Virginia University Foundation.
As an emergency department nurse and from personal experience, Summers knows the importance of end-of-life conversations and advance directives. Currently she is caring for an older brother who is in the final stages of colon cancer.
“I’ve seen and lived through different scenarios and I know what has worked and what didn’t,” Summers said. “Every patient is different. Palliative care and hospice teams can provide relief from the symptoms, pain and stress of a serious illness with the goal to improve quality of life for both the patient and family.”
Too often end-of-life planning begins in the last few days. When people reach the hospice stage or even before that, there is nothing wrong with good planning and knowing what the patient and family want to do.
“It’s better to make the decision about what you want at life’s end when your mind is clear, not when your mind is distraught facing your death,” Summers said. “The West Virginia Center for End-of-Life Care e-Directive Registry ensures that people’s wishes in advance directives or medical orders such as do-not-resuscitate or Physician Orders for Scope of Treatment (POST) are known.”
Results of the study also showed that a majority (90%) of West Virginia residents think it is important to be able to call someone day or night when they do not know what to do about themselves or a loved one’s serious illness. Most (50%) residents would call 911, EMS or an ambulance if they needed immediate assistance, while 15% would call their doctor’s office.
Many of the palliative care and hospice teams in West Virginia offer on-call support 24 hours a day with a medical professional. Cindy Jamison, who is a caregiver of her 89-year-old mother-in-law, said the access provides comfort and support for the family.
“It’s something different every hour of every day,” she said. “Hospice is a good resource. They answer all our questions and help us manage her care at any hour of the day.”
Another valuable resource for residents is the West Virginia Center for End-of-Life Care. “Sometimes families don’t know where to start and the West Virginia Center for End-of-Life Care can help point people in the right direction in their community. People don’t want to leave their community so being able to turn to a statewide organization who can advise is important,” she said.
The West Virginia Center for End-of-Life Care provides free information and tools (including free advance directives forms) to help West Virginians to put their wishes in writing so that they will be followed. For more information about advance directives or palliative care, call 1-877-209-8086 or visitwww.wvendoflife.org.