For patients with chronic, progressive, or terminal illness, there comes a time when it is apparent that treatment is no longer working. In fact, continued attempts at treatment can cause more harm than good.
In some instances, treatment may extend life by weeks or months but can interfere with the patient’s quality of life. Even though there may no longer be hope for recovery from illness, there is still hope for time with loved ones, hope for a peaceful, dignified, painless death, and hope to share one’s legacy with family and friends.
The question arises: When should one begin the conversation about initiating hospice and palliative care? It is very individualized. However, there are some indicators that it may be time to have this conversation. For example if the individual:
- Has made multiple trips to the Emergency Department and their illness continues to progress
- Has been admitted to the hospital multiple times and, despite this, their condition deteriorates
- Has declined to the point where they are frail, with failure to thrive
- Has chronic progressive illness and no longer desires aggressive treatment
When the decision is made to proceed with hospice, there are options for where this care can be delivered. Hospice is a holistic approach to one’s care in the setting of terminal illness and is not dependent on a particular place or facility. The following should be considered when deciding the optimal place for delivery of hospice services:
- Since most people would like to spend their final months at home, identify what the patient considers to be his or her home.
- Can hospice services be delivered at home or is the primary caregiver too frail or too ill to provide this care?
- When hospice care is provided outside of the home setting, explore venues that will make the place of residence as home-like as possible.
- Wherever hospice care is provided, the patient and family should expect to have access to hospice services 24 hours a day.
- Children should always be allowed to visit and, within reason, pets should have access to the patient.
Hospice care can be delivered in the patient’s home, in a nursing home, in a dedicated hospice house, in an assisted living residence, and in the hospital setting. Ideally, most patients want to stay in their home surrounded by their loved ones; however, sometimes the primary caregiver is too frail or too ill to provide care in the home setting. Under these circumstances, alternative arrangements may need to be made.
For some patients, their “home” is in a nursing home. A hospice may have contracts with nursing homes to provide hospice care for the nursing home residents. Hospice can help patients and their families in the nursing home setting by providing the following:
- Regular visits by a hospice RN
- Consultations by a hospice physician if needed
- Expert management of end of life symptoms such as pain, delirium, etc.
- Education for patients, families, and nursing home staff regarding the patient’s symptoms, medications, and the best way to care for patient’s medical needs at the end of life
- Spiritual and emotional support for patient and family including supporting the family before and after the death of their loved one
- Medications and supplies related to patient’s terminal illness
The nursing home in turn has the following responsibilities:
- Providing medications and supplies for symptoms not related to the patient’s terminal diagnosis
- Normally scheduled medical care by the primary care physician
- Routine daily care
- Monitoring the patient’s condition and reporting to the hospice
- Communicating and coordinating the patient’s care with the hospice.
In addition, hospice care can be provided in an assisted living facility. For many terminally ill patients, they identify their “home” as their assisted living facility apartment where they have perhaps lived for many years and developed a close relationship with staff. Many assisted living facilities contract with community-based hospice services, thus allowing end of life care to be delivered in the assisted living facility.
Hospice services can also be provided in comfort care homes. These are freestanding homes in the community that usually care for two people at a time, with nurses and volunteers providing care at no cost to the patient or family. Volunteers have extensive training and are able to provide personal care, emotional support, and medications as needed. A hospice nursing agency supports the care with nursing, social work, chaplain, and aide services.
Each comfort care home acts independently and chooses from a list of referred patients based on who they think has the greatest need. The nurse manager of the house will interview the person and bring pictures of the home to help the person understand what it might be like to live there.
All comfort care homes require that the patient’s physician state that the patient has a probable life expectancy of less than three months. Most homes will allow the patient to stay beyond that time if they are actively dying. Otherwise, if they are stable, the patient’s family will be asked to work with the hospice team to find a new venue of care, either at home or in a nursing home. Comfort care homes decline patients with a feeding tube. Most have an extra bedroom where a family member can occasionally spend the night.
Finally, for difficult-to-treat symptoms at end of life such as terminal delirium, small bowel obstruction, etc., an inpatient stay may be necessary. This can either be provided in the hospital setting or an inpatient hospice unit affiliated with either a hospital or a nursing home.
For example, patients can receive long-term end-of-life care at the Leo Center for Caring on the Irondequoit campus of St. Ann’s Community. The Leo Center provides skilled nursing with a comfort-care approach for those who are terminally ill with a prognosis of six months or less . The Leo Center ensures dignity, sensitivity and comfort, providing patients and their families a special opportunity for peace and closeness. Patients are welcomed from the local community and from area hospitals. The center’s multi-disciplinary approach ensures that the changing needs of patients and their loved ones are met with the highest level of skill and compassion.