When a loved one nears the end of life, you and your family might need to face many hard decisions ahead. These decisions can be tricky because, let’s face it, no one wants to face it.
When a loved one nears the end of their life, it can be emotionally challenging for both the client and family members. Coping with impending loss can be overwhelming. The decisions that must be made regarding end-of-life care can feel daunting, like choosing where your dying loved one spends their final days. While hospitals and hospice facilities are common choices, an increasing number of families are opting for end-of-life care at home.
This article explores what end-of-life care looks like in a home setting and provides insight on how to cope, how to set up the home for end-of-life care, and what you can expect during this challenging and emotional time.
Coping With Diagnosis
Coping with a terminal illness diagnosis is probably one of the hardest things any individual or family goes through. When your loved one’s health takes a turn, you and your family may face an untreatable diagnosis. Many individuals with terminal illnesses must cope with emotional distress and painful emotions like anger, fear, anxiety, and grief. It is essential to have open and honest conversations with your healthcare team to understand the illness, treatment options, and options for end-of-life care.
Importance of Self-Care
Self-care can look different to every individual. Whether you’re a family caregiver and need a break and opt for respite care or simply need to go for long daily walks to clear your head, your self-care is personal and yours to create. Family members and caregivers should prioritize self-care to ensure they have the energy and emotional capacity to support their loved ones during these challenging times.
As a child of a dying person, your emotions and personal health may be at risk. Grief and coping with a health diagnosis are not easy. Dr. Pooja Lakshim, M.D., a clinical psychologist, has recently written a book called “Real Self-Care” that highlights the problems with the concept of self-care that our culture prescribes to us. According to Dr. Lakshim, “real self-care, in contrast, is not as simple as a fancy spa retreat or a journaling app; it’s an internal and self-reflective process that involves hard work and making difficult decisions that are in line with our inherent values.” Family members and caregivers must prioritize this type of self-care to ensure they have the energy and emotional bandwidth to support their loved ones during the dying process.
If you or your loved one is facing a challenging diagnosis, it is okay to look for support. One way to do so is to expand your caregiving team by bringing on specialists to help you manage and cope. From home health aides to respite care to end-of-life doulas, there is a vast network of professionals ready to help you every step of the way.
Palliative care and hospice services can be beneficial in providing specialized care, emotional support, symptom relief, and management to enhance a person’s quality of life. Ultimately, coping with a terminal illness requires a collaborative effort between the healthcare team, the client, and their loved ones, to provide the best possible care and support during this difficult time.
End of Life Planning
Many individuals plan ahead for the end of life. End-of-life planning is an essential process involving decision-making about how you want to be treated and cared for when facing the end of life. It is a proactive step that can provide peace of mind for individuals and their family members.
End-of-life planning typically includes:
- Creating a will
- Selecting a healthcare proxy or substitute decision-maker
- Deciding who is on your ideal healthcare team and your healthcare wishes
- Discussing and evaluating treatment options with healthcare professionals
- Deciding on funeral and burial arrangements.
Many individuals opt for in-home end-of-life care, frequently wished for in an end-of-life care plan. This process can assist families with understanding the patient’s wishes and ensuring that those wishes are truly carried out. It can also help families decide where their loved one wants to receive care in their final days, weeks, or months.
End-of-life planning can also alleviate stress and the burden on family members during these difficult times. Planning ahead will provide direction and reduce the likelihood of disagreements or disputes. This process can be emotional and uncomfortable, but it can ultimately provide comfort and security for every person involved.
What Does End-Of-Life Care at Home Look Like?
Many individuals want the familiar and comfortable environment that comes with being at home in the final stages of life. It can ease anxiety and maintain a sense of normalcy during this challenging time. Contrary to popular belief, end-of-life care can be administered anywhere, including in someone’s home. However, some individuals may reach a point where their healthcare team can no longer manage in the home and may advise the client to transition to hospice. When it comes to that point, typically, the client’s condition will deteriorate, and the healthcare team will advise the family on the next steps for comfort and symptom management.
End-of-life care in the comfort of your own home may look different than end-of-life care in a designated facility. The palliative care team or hospice care team will come to you. In-home end-of-life services can have visits from health care providers, including:
- Nurses, palliative team or hospice team
- End-of-life doulas
- Occupational therapists and physiotherapists
- Registered dietitians
- Social workers and other health care professionals
- Trained volunteers
- Collaboration with your primary caregiver and primary care doctor, and palliative care physicians
The end-of-life care team can continue to provide support with daily tasks, including bathing, dressing, pain and symptom management, meal preparation, emotional support, and comfort care. They will also communicate and involve specialists if further action or care is needed. Our end-of-life care team at Nurse Next Door will ensure your home is also properly set up for this type of hands-on care and will guide you and your loved ones through the entire process, from where to access equipment and resources to home adjustments to the final and necessary preparations.
Many seniors express a desire in their end-of-life care plan to spend their remaining days at home, even up to their last moments. If this sounds like someone you know or love, Nurse Next Door will work with you to create the perfect home care plan for the end of life and help you remain at home for as long as possible.
Types of End-Of-Life Care At-Home
Palliative care and hospice care can be confused with one another but share similarities. There are some key differences between the two; the main difference is that hospice care is specifically designed for individuals who have a terminal illness and forgo curative treatment. Hospice care is a type of specialized end-of-life care provided during the final weeks of a person’s life. Whereas palliative care is a type of specialized end-of-life care that is provided to an individual with a limited life expectancy and can last for months to even years regardless of their prognosis or medical treatment goals.
Both types of specialized care can come with benefits when provided at home.
Hospice Care At-Home and Benefits
When a client is ready for hospice, typically, this would entail 24-hour supervision and support from hospice staff. A hospice care team can provide compassionate care, relieve symptoms, and offer emotional assistance during the entire process.
An in-home hospice team involves:
- Hospice nurse
- Social workers
- End-of-life doula or chaplain (if wanted)
- Other specialists
The team works closely with the patient and their family to develop a personal care plan that aims to provide medical assistance in comfort, symptom, and pain management and meet the client’s emotional and spiritual needs.
Benefits of receiving hospice care at home include:
- Maintaining a sense of familiarity and comfort
- Reducing hospital visits and associated costs
- Allow a family member and loved one to be more involved
- Providing a higher quality of life in the final stages
- Emotional and spiritual support
Palliative Care At-Home and Benefits
The goal of palliative care at home is the same as palliative care provided in designated palliative care facilities. Improving a person’s quality of life is always the aim, and palliative care teams strive to ensure they address an individual’s physical, emotional, spiritual, and medical care.
An in-home palliative care team includes:
- Nurses, including palliative nurses
- Social workers
- End-of-life doulas or chaplains (if wanted)
The team works closely with the client and their family to manage symptoms, provide emotional support, and help individuals and their families navigate the challenges of serious illness.
Benefits of receiving palliative care include:
- Personalized care tailored to a person’s individual needs and preferences
- Improved communication between healthcare providers and family
- Help clients maintain a sense of independence and control over their health
- Accessible emotional and spiritual support for the family and caregivers
Caregiving at Home in the Final Stages of Life
Health researcher Hsien Seow of McMaster University in Hamilton “found that people with advanced serious illness who receive more care at home have fewer visits to the emergency department.” Nowadays, more and more people hope to die at home and seek care services to facilitate a good death in their homes.
Receiving palliative or hospice care at home can provide many benefits, including being in a familiar environment, having loved ones nearby, and maintaining a sense of independence. However, receiving care at home rather than in a designated facility has some potential shortcomings.
One of the primary concerns in receiving end-of-life care at home is the availability of medical equipment and resources. Sometimes, sick individuals may require specialized medical equipment, which may not be readily available in a home setting. Additionally, some clients may require more intensive medical interventions or close monitoring, which may be more difficult to provide in a home environment.
Luckily, Nurse Next Door can alleviate the stress of not having the proper equipment and resources for your loved one. We provide access to specialized medical equipment and resources such as hospital beds, oxygen tanks, feeding tubes, and other medical supplies and medications. Nurse Next Door ensures clients have all the necessary equipment and resources to manage and relieve their symptoms while helping them remain comfortable in their own homes.
Another worry for many individuals facing end-of-life care decisions is the concern that receiving care at home may place a greater burden on someone’s family and caregivers. Caregivers may experience physical and emotional exhaustion, which can lead to burnout. Fortunately, Nurse Next Door can also help alleviate the stress of full-time caregiving duties by offering respite care services or end-of-life care. This would allow families and caregivers to take a break from providing care and avoid unnecessary burnout. These services can be particularly helpful for family members caring for a loved one at home who may be experiencing physical and emotional exhaustion.
Nurse Next Door can help you and your family make informed decisions based on the individual’s needs, wishes, and circumstances. In-home end-of-life care may be the best option for your loved one over a care facility, a hospital stay, or assisted living facilities.
We want to see seniors live independently for as long as possible. That is why home health agencies like Nurse Next Door make it possible to live comfortably at home for the remaining time of their lives. Working with Nurse Next Door will ensure that clients and their families receive high-quality and compassionate care while also providing practical support with every step of the way.
If your loved one needs end-of-life care, reach out to Nurse Next Door to learn more about your options, services, and how we can help provide comfort and support in a time of need. We’re here for you to help you and your loved ones through every stage of life.
Nurse Next Door is here to help you and your family during hard times. We’d love to set up a FREE Caring Consult™ to guide you through advance care planning and assist with your end of life care needs.
Give us a call toll-free at +1 (877) 588-8609 to get started!