End-of-Life Care

Hospice and Respite Care Support

In the final stages of many terminal illnesses, care priorities tend to shift. Instead of ongoing curative measures, the focus often changes to palliative care for the relief of pain, symptoms, and emotional stress. Ensuring a loved one's final months, weeks or days are as good as they can be, requires more than just a series of care choices.

Anticipating the demands of end-of-life caregiving can help ease the journey from care and grief towards acceptance and healing.

As with physical symptoms, every patient’s emotional needs in the final stages of life also differ. However, some emotions are common to many patients during end-of-life care. Many worry about loss of control and loss of dignity as their physical abilities decline.

It’s also common for patients to fear being a burden to their loved ones yet at the same time also fear being abandoned.

Late-stage caregivers can offer emotional comfort to their loved ones in several different ways:

• Keep the patient company. Talk to your loved one, read to him or her, watch movies together, or simply sit and hold their hand.
• Refrain from burdening the patient with your feelings of fear, sadness and loss. Instead, talk to someone else about your feelings.
• Allow the patient to express fears of death. It can be difficult to hear a loved one talk about leaving family and friends behind, but communicating their fears can help them come to terms with what’s happening. Try to listen without interrupting or arguing.
• Allow them to reminisce. Talking about their life and the past is another way some patients gain perspective on their life and the process of dying.
• Avoid withholding difficult information. If they’re still able to comprehend, most patients prefer to be included in discussions about issues that concern them.
• Honor their wishes. Reassure the patient that you will honor their wishes, such as advance directives and living wills, even if you don’t agree with them.
• Respect the patient’s need for privacy. End-of-life care for many people is often a battle to preserve their dignity and end their life as comfortably as possible.

Patient and caregiver needs during end-of-life care:

• Practical care and assistance. Perhaps your loved one can no longer talk, sit, walk, eat, or make sense of the world. Routine activities, including bathing, feeding, toileting, dressing, and turning may require total support and increased physical strength on the part of the caregiver. These tasks can be supported by personal care assistants, a hospice team, or physician-ordered nursing services.
• Comfort and dignity. Even if the patient’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains. Regardless of location—home, hospital, hospice facility—the most helpful interventions are those which ease discomfort and provide meaningful connections to family and loved ones.
• Respite Care. Respite care can give you and your family a break from the intensity of end-of-life caregiving. It may be simply a case of having a hospice volunteer sit with the patient for a few hours so you can meet friends for coffee or watch a movie, or it could involve the patient having a brief inpatient stay in a hospice facility.
• Grief support. Anticipating your loved one’s death can produce reactions from relief to sadness to feeling numb. Consulting bereavement specialists or spiritual advisors before your loved one’s death can help you and your family prepare for the coming loss.

Contact Extended Family Care at (610) 200-6097 for end-of-life care options.