Before a sick or aging loved one reaches the point where they need end-of-life care, which can also be referred to as palliative care, you will want to be aware of the signs and understand some of the decisions you may need to make as a caregiver. Follow these guidelines so that you are prepared to face end-of-life care issues.
Know the signs it's time for end-of-life care.
There isn't often one sign that signals when end-of-life care begins. But it may be time for palliative treatment if:
- Your loved one has made multiple trips to the emergency room.
- Their illness continues to progress and significantly affect their quality of life.
- They wish to live out their final days at home rather than stay in a hospital.
- They wish to stop receiving medical treatment.
- They require round-the-clock care that you can no longer provide.
Is it time for hospice care?
Typically an option for patients whose life expectancy is six months or less, hospice care focuses on alleviating pain and symptom relief to maximize quality of life. In many cases, patients prefer to remain at home and receive hospice home care in the final stages of their life, surrounded by the comfort and love of family and friends. However, hospice care can be provided onsite at some hospitals, nursing homes and other healthcare facilities.
To find the hospice program that is right for your loved one, you can get recommendations from your doctor or social workers from the hospital. You may also want to ask local friends and family who have been in similar situations for recommendations. When you contact hospice providers, here are some questions you should ask according to the American Hospice Foundation:
- Is this hospice Medicare-certified? This question is important if your loved one is a Medicare beneficiary — so he or she can receive the Medicare hospice benefit to help cover the costs.
- Is this hospice accredited and licensed by the state? State laws vary in terms of hospice licensing requirements. Check with your state’s Department of Health to learn what requirements need to be met in your state. Accreditation is not required but can confirm for you that the hospice meets “reasonable standards of care” according to either Community Health Accreditation Partner (CHAP) or Joint Commission on Accreditation of Healthcare Organizations (JCAHO).
- What does the hospice expect from family members in terms of their caregiving role? Make sure their expectations align with what the family is willing and able to do.
- Are there limits on treatment currently being received? Is there any type of necessary care the hospice can’t provide?
- Does the hospice offer extra services? Many are not required but may be helpful to improve the patient’s quality of life, such as radiation to reduce tumors and decrease pain.
- How rapid is crisis response? This is especially important for home hospice care. If you need someone to come provide care in the middle of the night, how long will it take the person to arrive?
- Does the hospice have doctors and nurses certified in palliative care? This credential means staff have specifically studied end-of-life care.
- How are concerns handled? If the patient or family members have concerns, what is the process to address the concern?
Signs you need to call for professional help
If your loved one chooses to receive end-of-life care in his or her home, there may be times when you are providing care but will need to call for the hospice nurse or a doctor to help. Examples include:
- If the patient is having trouble breathing.
- If pain medication doesn’t appear to be working and the patient is grimacing or moaning in pain.
- If the patient can’t urinate or empty bowels.
- If the patient refuses to take medication.
- If the patient has difficulty swallowing medication.
- If the patient talks about committing suicide.
When in doubt, if you are in a situation and don’t know what to do, you should not hesitate to call a professional.
How you can provide additional support
While every patient's needs are different, you can provide emotional support to your loved one during end-of-life care by doing the following:
- Keep them company by watching movies, reading aloud or simply holding their hand.
- Refrain from discussing your own fears or concerns.
- Encourage them to reminisce about happy memories.
- Respect their need for privacy.
- Reassure them that you will honor their wishes.
