Research suggests that approximately 90 million Americans are living with a life-limiting illness. That number is expected to double with the aging baby boomer population in the next 25 years. Approximately 6 million people in the USA can benefit from palliative care [01]. These figures are quite revealing, and as human beings, we will all have to face the end of life, either for ourselves or our loved ones, eventually.
The final stages of life can be challenging and emotional for both the dying person and their family members. It’s difficult to know what to do or where to turn when you reach the late stages of an illness. That is why having a qualified team of healthcare professionals by your side and the proper support system to guide you through these challenging times is important.
This article will provide an overview of end-of-life care, who can be on your caregiving team, and where you can turn for support when your loved one is facing the end of life.
What Is End-of-Life Care?
Individuals in their illness’s late or final stages may need end-of-life care. End-of-life care is an umbrella term for the care given to an individual in the late stage of an illness.
There are different types of end-of-life care, including hospice care and palliative care. For more information on the different types of end-of-life care, visit our recent article.
End-of-life care can be provided in a variety of settings, including a hospice care facility, hospitals, a long-term care facility, and an individual’s home. The care provided at the end of life is designed to help ensure that a person’s final days are as comfortable and peaceful as possible while also providing support and guidance to family members and loved ones.
Your Supportive Care Team
Several people in the end-of-life care team work together to provide comprehensive care and support to clients and their families during the end-of-life process.
A supportive care team can be part of end-of-life care teams for someone battling cancer. Some services the supportive team provides are self-referred, while others may require a referral from a doctor or nurse.
Several healthcare professionals can make up an end-of-life and supportive care team. They include:
A primary care physician or doctor: The primary care physician or specialist is usually responsible for overseeing a client’s medical care and coordinating with other healthcare t team members to ensure that the individual receives appropriate treatment and support.
Palliative care specialist: Palliative care specialists specialize in pain and symptom management and maintaining the quality of life for individuals with serious illnesses.
Hospice nurse: Hospice nurses are specialized nurses who provide skilled nursing care, emotional support, and guidance to individuals and their families in hospice care.
Social worker: A social worker can provide emotional and practical support to clients and families, helping them navigate through the complex medical, financial, and legal issues that can arise during end-of-life care.
Chaplain or spiritual counselor: Depending on the individual’s spiritual beliefs, chaplains or spiritual support counselors can offer emotional and spiritual support to individuals and families, helping them find comfort and meaning during the end-of-life journey.
Home health aides: Home health aides are professional caregivers that assist with activities of daily living, such as bathing, dressing, and grooming, and may also provide light housekeeping and meal preparation services.
Counselors and Psychiatry: Many family members look for support in family counselors and psychiatrists for mental and emotional support. These professionals can have private one-on-one sessions or group family sessions to help families and individuals manage emotions and the loss of a loved one.
Nutritionist: Nutritionists can play a valuable role in end-of-life care by helping control pain and symptoms while maintaining the quality of life through proper nutrition. They develop individualized meal plans considering the individual’s dietary needs, preferences, and medical conditions. Nutritionists can also help manage other symptoms like nausea, vomiting, and constipation, common with end-of-life care.
Occupational therapists: Assess clients’ physical abilities and limitations while working with them to develop ways to manage and carry out daily activities as independently as possible. Occupational therapists can also recommend using assistive devices and modifications based on the individual’s needs and environment to make it safer and easier.
Physical Therapy: Occasionally, patients may opt for physical Therapy to alleviate physical symptoms of their illness.
End-of-Life Doula: Like a birth doula, an end-of-life doula takes a holistic approach to care, supporting family members and individuals as they transition into the final stages of life. For more information on end-of-life doulas, visit our recent article here.
Trained Volunteers – Volunteers can provide additional emotional support and practical assistance to patients and families during end-of-life care.
Not every client has all of these professionals on their care team, some individuals may have one or two health care professionals, or others may want a full range of specialists helping them through their palliative care journey. Neither is right nor wrong; it is merely personal preference.
Caregiving in the Final Stages of Life
Caregiving in the final stages of life may look different than caregiving in other stages. Professional end-of-life caregivers may provide services and varying levels of support that widely depend on the needs of the dying person and the setting in which they receive care.
In general, caregiving at home and caregiving in a hospice care facility or hospital will have similar goals, as they all involve providing physical, emotional, and spiritual support to the dying person, as well as support and guidance to family members and loved ones.
Some of the specific tasks and responsibilities of caregivers in the final stages of life may include:
1. Pain and symptom management: Caregivers may work with health care professionals to relieve symptoms and manage pain, ensuring that the client is as comfortable as possible during the end-of-life process. Pain and symptom management is one of the key goals of care with end-of-life clients.
2. Providing personal care: End-of-life caregivers may assist with tasks such as bathing, dressing, grooming, and toileting, helping to maintain the person’s dignity and comfort. If a person
3. Administering medications – Caregivers may be responsible for administering palliative medicine and medications, including medications for pain and symptom management and medications prescribed to manage other symptoms related to their terminal illness.
4. Providing emotional support: Caregivers can offer emotional support to the person who is dying, providing comfort, reassurance, and companionship as needed.
5. Offering spiritual support: specialized caregivers may provide spiritual support to the person who is dying, offering prayers, readings, or other spiritual practices that can provide comfort and meaning during the dying process.
6. Managing practical tasks: Caregivers may help with practical tasks such as managing finances, arranging for transportation, and communicating with healthcare providers and other members of the care team.
7. Providing respite care: Caregivers may need to take breaks from caregiving to prevent burnout and maintain their own physical and emotional health. Nurse Next Door offers top-of-the-line respite services to family caregivers or primary caregiver who needs a break to rest and recuperate.
8. Palliative Care Services: some patients may require palliative care or hospice services if they’ve reached a certain point in their illness that makes them terminal. Caregivers who work in palliative care or hospice may provide practical support and medical care to the dying person while ensuring their quality of life to the best of their ability.
Coping With the Loss of a Loved One
Coping with the loss of a loved one is probably one of the most difficult things any individual will have to face. The grieving process will be different for everyone, and it is never straightforward. It’s important to give yourself time to give and seek support from family and friends or from a professional if needed.
Nurse Next Door can also provide support during this time, with services that range from emotional and practical support with tasks like meal preparation or errands. Our professionally trained caregivers can provide compassionate care and companionship, allowing family members to focus on their own grief. Additionally, Nurse Next Door can connect families with local resources and support groups to help them navigate the end-of-life process and cope with loss.
End of Life Support Resources
Many resources are available to help support individuals and families during the end-of-life process in the United States. Here are some potential resources to consider:
1. Nurse Next Door: We offer end-of-life care, respite services, and other care services to support you and your family during any difficult time. We are an excellent resource for families and individuals needing caregiving services, advice on end-of-life planning, and other resources! Our Care Team is always here to lend a helping hand and provide you with the right information to meet your needs and attain your loved one’s end-of-life care wishes.
2. Medicare: Medicare is the US federal health insurance for anyone 65 and older and some people under 65 with specific disabilities or conditions.
3. Medicaid: is a joint federal and state program that gives health coverage to some people with limited income. If you or a loved one is under a certain income threshold, they may qualify for some Medicaid services. This is a great resource for those with limited income and resources.
4. Veterans Affairs: this is a great resource for American veterans and their spouses. There are a number of health programs and end-of-life options that veterans and their spouses may be eligible for, including palliative care programs and services.
5. National Hospice and Palliative Care Organization (NHPCO) – This national organization provides information, resources, and support to patients and families facing incurable illness and end-of-life care. Their website offers information on advance care planning, grief and bereavement, and other end-of-life topics.
6. Aging and Disability Resource Centers (ADRCs) – ADRCs are local or regional centers that provide information and support to individuals and families facing issues related to aging, disability, and end-of-life care.
7. The Conversation Project– The Conversation Project is a national initiative encouraging conversations about end-of-life wishes and preferences. Their website provides tools and resources to help individuals and families initiate these conversations and information on advance care planning and other end-of-life topics.
8. American Cancer Society: American Cancer Society is a non-profit organization that is dedicated to fighting cancer through research, education, advocacy, and service. They provide a wide range of resources to cancer patients and families affected by cancer, including those needing end-of-life care.
9. Alzheimer’s Association: is a non-profit dedicated to advancing research, providing support, and raising awareness for Alzheimer’s disease and other forms of dementia. The organization offers a variety of resources for individuals and families affected by dementia, including those in need of end-of-life care. For more information on end-of-life care for those living with dementia, read our latest article here.
10.The Caring Blog: Nurse Next Door’s Caring Blog is a great resource for topics on end-of-life care, dementia, aging, and senior care. Our team carefully plans and writes weekly articles to help navigate the complexities of end-of-life, aging, and healthcare. We make every effort to write compassionate blog posts that aims to answer questions, offer guidance, and provide resources so that you can make the right care choices for yourself and your loved one.
If you have any suggestions or topics you want to read, please contact us at 1-877-588-8609. Or read our Caring Blog for more articles on END OF LIFE CARE and senior topics.
Nurse Next Door is here to help YOU and your loved one with end-of-life care and provide you with relevant resources and guidance.
Give us a call toll-free at +1(877) 588-8609 to get started!
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