Living With Serious Illness

Much too often hospice care providers receive referrals at the very end of a terminal illness. 25% of all hospice care is provided in the last seven days of a client’s life and 10% of all hospice care is provided for merely 24 hours! Such late referrals severely limit the full potential and full benefit of the care designed to be delivered by a hospice interdisciplinary team. It is just not possible to effectively address the many needs of a client and his or her family in such a brief period of time.

Often the surviving family members comment that they wish that hospice care had been started much earlier so that those involved could have benefited from the full range of hospice services including pain and symptom management, home care services, and emotional and spiritual support. The reflection that our bereavement counseling staff hears from surviving family members more than all the others combined is “Why didn’t we know about hospice care sooner?”

Often the lived experience of physical decline and death is influenced by psychosocial factors including the will to live, personal goals, and withdrawal from interpersonal interaction. What follows is a general description of the changes that typically take place in the conditions of people in the last six months of a terminal illness. These markers can be useful in assessing and promoting timely access to hospice and the wide array of services provided by hospice care staff to clients and families at the end of life. Every terminal experience is unique and may or may not include changes described in the following details.

Upon admission to hospice care or in the basic six-month timeframe, The Client is generally ambulatory, coherent, experiencing possible side effects from new medications, initial stages of grief, and may be struggling to comprehend the life-limiting prognosis. At five months weight loss may begin, general weakness is often experienced, and the client will continue efforts to integrate the reality and emotions of a terminal prognosis. With four months remaining there is typically continued weight loss, decreased appetite. Physical symptoms may be more pronounced as well as anticipatory grief as a result of the numerous physical, functional, social, and other losses.

At the three month point in the process physical deterioration is more apparent, symptoms increase, withdrawal often begins as the client makes continued efforts to accept and integrate the reality of the terminal illness. The next month begins more physical deterioration and symptoms. The client may be bedridden and withdrawal may grow more pronounced as effort is made to reach acceptance of the nearing of death. In the final month active dying is experienced with pronounced withdrawal requiring total care, intensive management of symptoms and no appetite.

At the outset of an optimum period of hospice care (six months) the hospice Medical Director collaborates with the Attending Physician who does an initial assessment of the client. The Medical Director will certify the appropriateness of hospice, participate with the Interdisciplinary Team, the client, and the family in the development of a Plan of Care, and provide support. In the next two months the Medical Director will typically monitor the plan of care, attend Interdisciplinary Team meetings, provide orders, evaluate symptoms, manage pain, and support the client and family. Every 14 days the Director will reassess the plan, continue monitoring care, update orders, and continue supporting client and family. As the Plan of Care unfolds the Director will typically attend to increased need for medication and pain control while maintaining support for client and family.

The Hospice Nurse is central to the establishment of the Plan of Care at the outset of care, assuring that the plan is sensitive to the unique cultural needs of the client and family through collaboration with them. This RN will recommend medications, order durable medical equipment, and teach primary caregivers while establishing rapport with client and family. At five months the nurse is typically coordinating the plan of care with team members and providing direct care while reporting observations to the team. At four months the nurse is monitoring the ongoing implementation of the plan and the increasing need for symptom management and pain control. The next two months typically involve increasing need to order changes, pain control, and coordination with caregivers and family. As the Plan of Care plays out the nurse is typically providing monitoring of end of life care needs and preparing for the physical end with team members while providing increasing support to both the client and family. After the death of the client the nurse will call and/or visit the family, assess for bereavement needs, attend the funeral, and arrange a closure visit with the family.

The initial role of Hospice Aides is to start personal care programs as outlined in the Plan of Care, teach primary Caregiving, and establish supportive, trusting relationships with clients and families. In succeeding months they continue to provide personal care services according to the care plan, reporting special needs to the RN. The care needs may include bathing, dressing, and other needs and care measures as necessary. As the Plan moves forward they will typically increase contact with the client and family for direct care, assuring that all personal care needs are met and providing comfort measures. After the death they often attend the funeral and pay a visit to the family.

At the outset of hospice care the Social Worker will have an initial meeting with the client and family to assess psychosocial and bereavement needs. The MSW plays a central role in developing the Plan of Care, respecting client and family dynamics and working in collaboration with the team and family while building a trusting relationship with them. In the following month the Social Worker will continue working very closely with the client and family, determining any need for referral to other community resources and providing ongoing psychosocial support to the client and family. In the months following the Social Worker will provide ongoing assessment of the client’s and family’s ability to cope with the terminal prognosis, facilitate support systems, assess the appropriateness of respite care for the primary caregivers, encourage opportunities for life closure, assess signs of complicated grief, provide appropriate intervention, and continue with support of the client and family. As the Care Plan unfolds the Social Worker will continue to monitor the plan of care, assist in resolution and life closure work and help with end of life preparations as appropriate. After death, the MSW will typically attend funeral, call on the family, work with designated bereavement staff to identify at-risk bereaved and work with the coordination of bereavement services.

The Chaplain begins involvement by conducting a spiritual assessment that honors individual traditions and beliefs, conferring with the team, client, and family, as well as community clergy for the spiritual dimension of the development of the Plan of Care. In subsequent months the Chaplain implements this plan by conferring with those clients and families who desire spiritual support as well as assessing other needs requiring psychosocial intervention. Along the way the Chaplain will encourage the family to continue to observe rituals that provide meaning and support. In the final months the Chaplain will continue with spiritual support and assist with final arrangements as requested, working increasingly closely with client and family in preparation for physical death. Afterward the Chaplain will typically visit the family, providing grief support.

At the beginning of the six month timeframe hospice Trained Volunteers work in collaboration with the team and staff to arrange task-appropriate visits to begin the opportunity to establish supportive, trusting relationships with clients and families. In the next couple months Volunteers continue building these relationships, assisting with clients’ choices of activities such as letter writing, providing emotional support and respite care for families. They attend to client preferences in food, visitation, special interests, as well as social and emotional support.

Hospice offers help and support to the client and family on a 24-hour-a-day, seven-day-a-week basis. Clients routinely receive periodic in-home services of a nurse, hospice aide, social worker, and other members of the hospice interdisciplinary team.


Some of this material adapted from "Timeline Phases of Hospice Care" by the National Hospice and Palliative Care Organization.