Caring for a terminally ill loved one is a significant decision that requires careful consideration. You want to ensure your loved one receives the best care while maintaining their comfort and dignity. As a hospice nurse with years of experience, I understand families’ challenges in making this choice. In this article, we will explore the factors to consider when deciding between home care and facility care for your terminally ill loved one.
Understanding the Needs of Your Loved One
The first step in making this decision is to assess the specific needs of your loved one. Consider the following:
Medical Needs: Evaluate the medical care and supervision required to manage your loved one’s symptoms and relieve pain. Some questions you can ask are:
What kind of treatments or medications does your loved one need?
How often do they need to see a doctor or nurse?
Do they need special equipment or devices?
How comfortable are you or other family members with providing medical care at home?
Mobility and Activities of Daily Living (ADLs): Determine if your loved one can move around independently or requires assistance with bathing, dressing, and eating. Some questions you can ask are:
Can your loved one walk, sit, stand, or transfer from bed to chair without help?
Do they need aids like a walker, wheelchair, or lift?
How much help do they need with personal hygiene, grooming, and dressing?
How much help do they need with eating, drinking, and swallowing?
How accessible and safe is your home for your loved one’s mobility needs?
Psychosocial Needs: Consider your loved one’s emotional and psychological well-being. Determine if they would benefit from the familiarity and comfort of home or need the additional support and social interactions offered by a facility. Some questions you can ask are:
How does your loved one feel about staying home or moving to a facility?
What are their preferences, values, and beliefs about end-of-life care?
How much social support do they have from family, friends, or community?
How do you and other family members feel about caring for your loved one at home or in a facility?
Available Support and Resources at Home
Caring for a terminally ill loved one at home can be a rewarding experience, but it also comes with challenges. Assess the support and resources available in the home environment:
Family and Friends: Consider the availability and willingness of family members and friends to provide care and support. You may need a team of caregivers to share the responsibilities. Some questions you can ask are:
Who can help you with caregiving tasks, such as bathing, feeding, or giving medications?
How often can they help, and for how long?
How do they feel about caring for your loved one at home?
How can you communicate and coordinate with them effectively?
Hospice Care Services: Explore the hospice services available in your area. Hospice care can provide essential medical and psychosocial support at home. Some questions you can ask are:
What are the eligibility criteria and costs of hospice care?
What kind of services and staff does hospice care provide?
How often and for how long will they visit your home?
How can you contact them in case of an emergency or if you have a question?
Financial Resources: Evaluate the financial resources available to support home care. This includes insurance coverage, government assistance, and other financial aid options. Some questions you can ask are:
What are the expenses involved in home care, such as equipment, supplies, medications, or utilities?
What are the benefits and limitations of your insurance plan regarding home care?
How can you manage your budget and keep track of your expenses?
Comfort and Familiarity of Home
For many terminally ill patients, being at home offers a sense of comfort and familiarity, which can positively impact their emotional well-being. Consider the following benefits of home care:
Familiar Environment: A familiar environment surrounded by personal belongings and memories can provide comfort and security. Some examples are:
Your loved one can sleep in bed, use their bathroom, and enjoy their favorite views or sounds.
Your loved one can keep their pets, plants, or hobbies that bring them joy and relaxation.
Your loved one can avoid the stress and hassle of traveling to a facility or adjusting to a new setting.
Family Presence: Having loved ones nearby can create a strong support system and offer emotional reassurance to the patient and family members. Some examples are:
Your loved one can spend quality time with you and other family members without visiting hours or restrictions.
Your loved one can share their feelings, thoughts, and wishes with you and other family members and receive comfort and guidance.
You and other family members can be more involved in caring for your loved one and express your love and gratitude.
Control and Autonomy: Home care allows patients to maintain control and autonomy in their daily routines and decision-making. Some examples are:
Your loved one can choose when to wake up, eat, rest, or do other activities according to their preferences and comfort level.
Your loved one can have a say in their treatment plan and care goals and communicate their needs and concerns to their caregivers.
Your loved one can preserve their dignity and privacy and avoid feeling like a burden or a patient.
Facility Care: When Is It a Better Option?
In some cases, caring for a terminally ill loved one at home may not be feasible or practical. Facility care can be a suitable option when:
Complex Medical Needs: The patient requires specialized medical care or interventions that cannot be provided at home. Some examples are:
The patient needs frequent tests, procedures, or surgeries that require hospital equipment or staff.
The patient has a serious infection, bleeding, or other complication that needs close monitoring and treatment.
The patient has a condition that affects their breathing, heart, or brain function and needs life-support machines or devices.
Safety Concerns: The home environment poses safety risks due to architectural barriers, lack of equipment, or the need for continuous supervision. Some examples are:
Due to mobility issues, confusion, or agitation, the patient is at risk of falling, wandering, or injuring themselves or others.
The home is not accessible or comfortable for the patient, such as having stairs, narrow doorways, or inadequate heating or cooling.
The home does not have the necessary equipment or supplies, such as a hospital bed, a wheelchair, or a backup generator.
Caregiver Burnout: Providing care at home can be physically and emotionally demanding. If the primary caregivers are experiencing burnout or unable to meet the patient’s needs, facility care may be a better choice. Some signs of caregiver burnout are:
Feeling exhausted, overwhelmed, or depressed.
Having trouble sleeping, eating, or concentrating.
Neglecting your health, hobbies, or social life.
Feeling angry, guilty, or resentful towards the patient or yourself.
Social Interaction: Some patients may benefit from the social interaction and structured activities offered in a care facility. Some benefits are:
The patient can meet and talk to other patients, staff, or volunteers with similar experiences or interests.
The patient can participate in group activities, such as games, music, or art, which can stimulate their mind and body.
The patient can receive emotional and spiritual support from counselors, chaplains, or other professionals.
Making the Decision
Deciding between home care and facility care is a deeply personal choice and may depend on individual circumstances. Consider the following steps to help make an informed decision:
Consult with Medical Professionals: Discuss your loved one’s condition and care needs with their healthcare team, including hospice professionals. Some questions you can ask are:
What are the expected outcomes and prognosis of your loved one’s condition?
What are the advantages and disadvantages of home and facility care for your loved one?
How can hospice care help you and your loved one at home or in a facility?
Talk with Your Loved One: If possible, involve your loved one in decision-making. Understand their preferences and wishes regarding care. Some questions you can ask are:
How do you feel about staying at home or moving to a facility?
What are your goals and priorities for your care?
What are your fears or concerns about your care?
Tour Facilities: If considering facility care, visit potential facilities to assess the environment, staff, and services provided. Please consider unscheduled visits during the day, evening, and weekend; talk with the staff and residents. Some questions you can ask are:
How clean, comfortable, and secure is the facility?
How qualified, friendly, and attentive are the staff?
What are the costs and payment options of the facility?
What are the rules and policies of the facility, such as visiting hours, personal belongings, or food preferences?
Seek Support: Consult with social workers, hospice counselors, or support groups to help you navigate decision-making. Some questions you can ask are:
How can you cope with the stress and emotions of making this decision?
How can you communicate effectively with your loved one, family, and healthcare providers?
How can you find and access the resources and services that you need?
Conclusion
Choosing between home care and facility care for a terminally ill loved one is a complex decision that requires careful consideration of medical, psychosocial, and practical factors. The decision should prioritize your loved one’s comfort, dignity, and quality of life.
