Caring for patients in the end-of-life stage

November marks the beginning of Home Care and Hospice month, a time of bringing awareness and showing gratitude to those who serve patients and their families. Hospice care is described as caring, not curing, for patients who are facing life-limiting illness or injury by a multidisciplinary support team. Those who aid in the efforts of hospice care can include an expert medical team, pain management, and spiritual and emotional support. The National Hospice and Palliative Care Organization defines hospice as compassionate care that is tailored to a patient’s needs and wishes, as well as the family’s well being. According to NHPCO, everyone has the right to die pain-free and with dignity.

Hospice care serves its patients in a range of settings to best accommodate that person and their family. Oftentimes it takes place in the home of the patient, but can also be found in hospice care centers, hospitals, nursing homes and other long-term care facilities. Typically when an individual becomes terminally ill, a family member may become the primary caregiver. Hospice and palliative care can provide invaluable support for that caregiver by being on-call 24/7 and making regular visits to the patient to assess for well being. While the caregiver can be responsible for making many decisions for their loved one, hospice will help in managing pain and symptoms as related to their illness.

The care that hospice provides is comprehensive. According to the NHPCO, while hospice can attend to medical and pain management needs, they also are equipped to handle the emotional and spiritual needs that can be a part of dying. Additionally, they can offer specialty services such as physical and speech therapy, psychosocial needs and make arrangements for inpatient services should symptoms become too difficult to manage at home. For the patient’s caregiver or family of caregivers, hospice can support and guide in managing the care of their loved one, as well as offer bereavement counseling.

One of the more important aspects of hospice and home health care is the discussion and knowledge of what those services will mean for one’s family. Planning for end-of-life circumstances can be a difficult conversation, but having those details and one’s wishes clearly lined out is the recommended best practice. To make that possible, the NHPCO suggests having that discussion before it becomes a reality. This can ease the stress during a time of uncertainty and fear. It can also prevent family members from being put in pressured and uncomfortable situations. Early planning, or advance care planning, is encouraged so that individuals can have their own personal needs met in the event of an unforeseen circumstance. Advance care planning is done in order to carry out those needs or wishes should the individual not be able to speak for themselves.

According to the NHPCO, advance care planning can include gathering information on life-sustaining treatment options, making decisions about which options are most appropriate for the individual, communicating and sharing this information with family and loved ones, and then putting those plans into writing. This particular kind of planning and the subsequent discussion can be overwhelming and scary – which is another area in which hospice care workers come to support. The team of professionals are there to answer any question or concern the individual or family might have, helping to ease some of the anxiety or fear.

The National Association of Home Care and Hospice calls for everyone to become a home health advocate, and particularly during Home Care and Hospice month. Being an advocate can include simply becoming more knowledgeable of the services of hospice, but also reaching out on a broader scale by meeting with elected officials and building positive relationships to garner more recognition to the service of hospice. Other ways to help support are to share experiences or stories so that others know of the benefits of this type of care.

To donate to The National Hospice Foundation, go to www.nationalhospicefoundation.org. The donations go to help in their efforts to offer compassionate care to every person facing death, illness or grief. For more information on choosing a hospice, what services they offer or other ways to help, go to the NHF website or the NHPCO website at www.nhpco.org.