Being a Hospice Patient

Once the decision to enter hospice has been made and the paperwork is signed, the hospice team will develop a care plan tailored the patient's needs.

The care plan will include:

  • A schedule of visits to be made by professional staff and volunteers.
  • All medications currently taken related to the terminal illness, including both prescription and over-the-counter medicine.
  • Equipment and supplies that are needed, including such items as adjustable beds, shower bench, oxygen, wheelchair, and other items to keep the patient comfortable, independent and safe.

In the first week or so, members of the care team will schedule regular visits. How often they visit will change as needs change.

Nurses come once or twice a week—more often, if necessary—to monitor any pain or other symptoms. The nurse will consult with the primary care provider about any needed medication changes and keep him informed on any changes in condition. The nurse will also provide guidance on what to expect as the illness progresses and will answer any questions.

The nurse can order other support services, too:

  • Hospice aides visit as often as needed and will help with bathing and personal grooming tasks.
  • Massage therapists typically come once or twice a week to help with relaxation and pain relief.
  • If a patient has special needs, the nurse might request a consultation with the physical therapist, speech therapist, occupational therapist, or acupuncturist.

The social worker will visit once or twice a month. Like the nurse, the social worker adjusts frequency of visits to needs and wishes of the patient.

A social worker may

  • spend time getting to know the patient and his or her family.
  • help with final plans and find other resources that might be needed, such as private caregivers, financial assistance, or a respite care volunteer.
  • provide information about what to expect throughout the dying process.
  • offer a teddy bear bag for children in the family. Teddy bear bags include age appropriate materials to help children work through feelings they may be experiencing.

While hospice staff and volunteers are not with the patient every minute of the day, they do help the family and friends develop a plan to ensure the patient's safety and comfort. Hospice supplements the care already provided by family, friends, and paid caregivers. Hospice is not a substitute for care already provided by family, friends, and paid caregivers; rather, hospice supplements and supports that care.

A nurse is always just a phone call away. Lumina Hospice & Palliative Care provides an on-call nurse 24 hours a day, seven days a week who can assist patients and families after hours and on weekends with questions and changes that occur. If the questions or problems cannot be resolved over the phone, then the nurse will make a home visit.

Patients keep their own doctor throughout their hospice experience. Physicians are regularly updated and consulted by the hospice team. Other members of the care team will visit from time to time, too, depending on what help is needed or desired.

When requested, a respite care volunteer may

  • Visit once or twice a week to provide family members a rest from caregiving
  • Provide the patient with companionship
  • Read aloud or prepare a meal
  • Offer special services, such as playing music, bringing a therapy dog for a visit, doing an art project, or recording a life history

Needs and wants may change over time, and hospice team members will adjust their visits to accommodate those changes.