When a patient with a life-limiting illness meets with their hospice provider, one of the first conversations will involve setting goals for end of life care. Each hospice journey is unique, whether it’s a quick death or months-long decline. Having important conversations about death and dying aren’t easy, but they are necessary.
This article will:
- Define what end of life goals are and are not.
- Outline four areas of care.
- Give examples of individualized patient-centered end of life goals.
What are End of Life Goals?
Many studies define goals of care as “the overarching aims of a patient’s medical care,” or as one critical care physician stated, “determining patient preferences.” We all want the ability to make our wishes known in life, as well as in death.
Hospice has unique goals for care. While hospice objectives may seem like the opposite of typical healthcare (such as pursuing treatments for curing a disease), outlining a patient’s end of life goals brings clarity and consistency. In nearly all cases, the prognosis for hospice patients is terminal and outlining goals support that in a dignified way. Patients qualify for hospice care when a doctor gives a life expectancy of six months or less and curative treatments are no longer working.
Therefore, end of life goals help outline a patient’s wishes based on their values for physical symptoms, emotional support, relational support and more. With hospice, end of life goals are life-affirming, but do not hasten or postpone death.
Four Major Areas of Care
When discussing your care, the hospice team can compassionately help you cover important areas of planning. The National Institute on Aging outlines these four areas of care for end of life goals:
- Physical comfort. This includes pain management, skin health, breathing difficulties, fatigue, digestive issues, nausea, hygiene and more. Treating or staying ahead of pain is often a top priority for patients. Many times, hospice patients eat little, which is a normal part of the dying process. Other goals may include keeping their eyes, lips and mouth moist and ensuring their physical safety (such as a medical bed or trip hazards) at home.
- Mental and emotional needs. It’s normal for patients and their loved ones to feel anxious, depressed or fearful about dying. Hospice helps address these needs with social workers; companionship from aides and volunteers; emotional support therapies like music, pet, or art; referrals to counseling, support groups and more. In the home, simply listening to the patient share their fears or recount memories offers needed emotional and mental support.
- Spiritual needs. The reality of death often brings spiritual needs to the forefront. Many patients find comfort in their faith or spiritual practices. If there isn’t a faith tradition, a patient may want to make peace with their life and in relationships. In addition to personal clergy, hospice spiritual care coordinators/chaplains can help honor those requests and facilitate conversations.
- Practical tasks. Patients facing the end of life might worry about practical matters, like their beloved spouse/partner, pet, home or possessions. Caregivers can reassure them with specifics, such as, “We will look after mom, don’t worry.” or “You know your grandson will take good care of your dog, Coco.”
Caregiving can be exhausting, so practical support for caregivers is also important during care planning. They need a good support system for taking on small tasks like running errands, meals, laundry, keeping family informed, etc. Hospice can also assist with practical planning, such as funerals, facilitating legal documents like health care proxy, wills and more.
Training in-home caregivers and family members in all of the tasks above is an integral part of hospice care. Between visits from hospice nurses and other support staff, the caregiver can help address these needs with pain and symptom control; providing emotional support by creating a soothing environment; spiritual support by keeping up religious practices like prayer, reading and rituals; and attending to practical needs.
Finally, another part of the planning process involves aligning the patient’s desires with the caregiver’s and/or family’s wishes and communicating clearly with the hospice team. As symptoms change or time passes, patients, caregivers and the hospice team can reevaluate goals based on the patient’s values and desires.
Examples of End of Life Goals
Many people misunderstand hospice care as being bed bound and giving up. In truth, however, hospice provides quality of life and empowers patients and their loved ones to provide input for a peaceful end. Each patient and family is different, so hospice providers like Heart to Heart Hospice come alongside families to lead end of life conversations, equipped with experience and compassion. Let’s explore examples of differing end of life goals below.
While one patient may want maximum pain medication, which may cause major fatigue and brain bog, another might value staying alert and wish to handle some levels of pain with minimal intervention.
Many hospice patients desire to die at home or a nursing facility that they consider home, so end of life goals may include avoiding hospitalization at any stage.
One patient may want to travel or complete bucket-list items as long as they’re able, while another may want to be surrounded by the comforts of home with others visiting them.
While there may not be a “perfect death,” there is well-informed planning and care along the way with end of life goals. Being prepared and setting realistic goals that honor the patient offers great direction, peace and closure to families.
