How to prepare your family for at-home palliative care by Dr. Alexander Everest
When patients have reached the end of curative care for their serious illness, their doctor may recommend palliative home care. Palliative care is concerned with providing relief from the stress and symptoms of a terminal illness. Palliative care is determined by the patient's needs rather than the prospect of recovery. While it is most often used at end-of-life, it can also be appropriate for illnesses where curative care is still taking place.
Dr. Alexander Everest, a healthcare Executive with over 20 years of experience, explains the best ways to prepare your family for palliative care in the home.
Working With Family Expectations
Having a seriously ill family member in the home can be extremely stressful for other family members. During the advanced stages of a loved one's illness, families have to manage multiple caregiving demands while dealing with grief and distress.
Families may not be prepared for the level of care that has to be given for a patient to become comfortable. Some families may hire in-home aides to take care of their daily needs while the healthcare professionals are not present. In contrast, others perform many of these tasks themselves—family members who have to provide the most hands-on care experience extreme stress.
In 18 to 35 percent of caregivers, there is a risk of developing significant psychological problems. Families must accept the likelihood of their loved one's death while at the same time projecting a sense of calm in their loved one's presence.
While caregiving is a highly stressful endeavor, terminally ill patients are grateful for their loved ones' care. Patients feel a sense of purpose and treasure their opportunity to spend quality time with their loved ones as their lives come to a close. They also take the time to heal fractured relationships and resolve disputes.
Making Sure the Patient is Comfortable
Some of the problems that a terminal palliative care patient may experience include pain, breathing problems, digestive problems, temperature sensitivity, breathing problems, and fatigue. Comfort care is most often used to treat, prevent, and anticipate suffering. Comfort care also addresses a broad spectrum of needs, including emotional, intellectual, spiritual, and social needs.
Patients can be made more comfortable by stopping medicines that do not aid in their comfort. Blood draws, and other therapies are replaced with new medications to alleviate pain, nausea, and discomfort.
Giving Healthcare Professionals Everything They Need
Healthcare professionals will often provide families with a list of durable medical equipment needed to provide palliative home care. These can include any or all of the following:
- oxygen tanks
- hospital beds
- wheelchairs
- walkers
- blood pressure monitors
- lifts
- kidney or at-home dialysis machines
- catheters
- needles
- syringes
- bedpans
- feeding tubes
The patient should have their own room, which provides privacy for medical professionals to do their jobs. However, the patient should not be cut off from family activities. The patient needs to feel connected with their family to the greatest extent possible during palliative care.
Prospects for Your Loved One's Treatment
In most cases, palliative care comes into play when a patient has exhausted curative treatments. Bringing someone home to end their lives in peace, away from the stressful and noisy hospital environment, can be a blessing for the ill loved one. However, it can be heartbreaking for the family members tasked with caring for their loved ones. It is necessary to accept the family member's condition and understand that they do not have a prospect for recovery. Instead, they are being made as comfortable as possible in the time they have remaining.
It is recommended that family members of patients receiving palliative care have home health aides at least part of the day. Shouldering the entire burden of a patient's care can have serious effects on a loved one's physical and mental health as well as their social well-being.
Emotional Consequences
While palliative care can be a positive for patients' emotional health, the up-close evidence that a loved one is dying can be difficult at best. It takes a certain amount of philosophical adjustment and attitude shift for many family members to accept their loved one's condition.
Even before a patient has passed away, family members may find that they are already grieving their loss. Family members should also receive professional support during the grieving process. Individual or group counseling will help, as will talking with their spiritual advisor.
Understanding Palliative Care
Palliative care can be a blessing for the terminally ill, but families need to accept the situation before successfully providing care. Dr. Alexander Everest recommends engaging as much professional help as possible during the process of adjustment to palliative care. When family members have accepted the situation and are ready to provide loving, comforting care to the terminally ill patient, they will experience peace in their last days. The caregivers will feel comforted as well that their loved ones are in good hands.