by Terry Rogers
One of the services offered by Delaware Hospice is help during someone’s final days of life, in many cases, allowing them to remain at home where they are more comfortable. As someone nears the end of days, the hospice team’s focus shifts from managing an illness to helping family members navigate what can be a traumatic and grief-laden event, helping the family enjoy the final moments with a loved one.
“Understanding what hospice does is critical when a loved one is dying,” Emily Petito, Delaware Hospice Nurse Practitioner, said. “The statistics show that many patients do not utilize hospice services until their last days of life, even though they are eligible for services much sooner. Early access to hospice can improve symptom management and alleviate patient suffering. We know that this is of utmost important to family members caring for loved ones at the end of life. One of the most important things hospice and to help prepare a caregiver for end of life care is to provide education on what symptoms they can expect and how to best manage them. This preparation helps the caregiver to feel equipped to help provide their loved one with the best care possible during this very difficult and uncertain time.”
During the last days of life, certain physical processes occur that often frighten and confuse those who are helping care for them. The patient may begin constantly moving around in their bed, making noises in their throat or experiencing long pauses in breathing. Even though these symptoms may not cause discomfort to the patient, they can be distressing to family members who are tending to them. This can interfere with the family’s ability to enjoy those precious last minutes.
One of the things a hospice nurse does is to assure that the patient is comfortable and adjust medication to manage some of these symptoms. A certified nursing assistant or volunteer also assists with small tasks like picking up medication or cleaning the patient to lighten the caregiver role for the family. A hospice nurse also calls or visits the family daily while other team members make regular visits as a way to support the family as well.
“As symptoms change, the staff shows the family how to handle different situation and how to make their loved one comfortable,” Petito said. “The patient’s hospice nurse, the chaplain and others on the team provide ongoing emotional support as they accompany the family on this final journey, helping them arrive at the other side as best they can.”
When the patient passes, a hospice nurse comes to the location to make a final pronouncement of death, completes forms for a death certificate and coordinates any other details that the family requests. This may include contacting the funeral home, bathing the patient and sitting with the family, just listening and offering support until the funeral home arrives. If there is medical equipment in the home, hospice also coordinates the removal as medical equipment left behind can be upsetting to the family.
Bereavement support is another service offered to families after someone passes. The family is connected to counselors who offer support over the next year in a variety of formats. Families may take advantage of bereavement groups or individual counseling to help them through the difficult process. Children may be connected with the New Hope program in advance of the death as children often need additional support.
“There is a common misperception that hospice care is all about death,” Petito said. “Ask any of Delaware Hospice’s team members and they will tell you that hospice care is really about life. It is about making the remaining time a family has together the best it can. Our teams consider taking care of a loved one at the end of life an extremely high privilege and they take that responsibility seriously. Their goal is to accompany a family on a journey from illness to passing, from grief to healing, bringing hope to any family they touch.”