The unique story of how you or someone you love will die is similar to their unique story of being born. And just like getting specialized care for pregnancy and birth, some professionals are experts in the death and dying process.
– Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN
A lot of people don’t want to talk about death and dying. Yet, talking about death doesn’t mean it’s going to happen, and it’s usually better to talk about it before it happens – for everyone involved.
Death and dying are something that a lot of people don’t have a lot of experience dealing with. That’s because over the past several decades, as a society, we have moved death out of the home and into institutions.
For some, the information I share in this podcast may be an intellectual conversation/ information) – for others, it may hit the heart. It’s one thing to listen to information about death and dying when you’re not right in the middle of it; compared to being in the middle of it and trying to learn more. Listening to and learning about death and dying can be harder when your heart is hurting.
Many of the most important things tend to range from education around what to expect, preparing by getting their finances straight and getting advanced directives in order. There are many things to think about when preparing for the end-of-life— if you’re lucky enough to have time to do so.
In my experience, some people have the luxury of this time, and some don’t. Those whose loved one dies unexpectantly are upset because they didn’t have time to resolve unfinished business or get to a place of acceptance ~ compared to those families whose loved ones take months to weeks to ultimately die being upset that it’s taking so long for death to come, because it’s emotionally exhausting.
In this episode of This is Getting Old: Moving Towards an Age-Friendly World, we will discuss end-of-life care— two different types of care; as well as the providers involved and the type of care provided.
Key points covered in this episode:
✔️ What is the difference between End-Of-Life Care, Palliative Care, and Hospice Care?
It can be very stressful when you or someone you love is diagnosed with a life-threatening, serious illness. For most people who go through this experience, it is helpful to understand what type of care and resources are available. This information will help you navigate the system to get answers to the questions you have – or will have – and help you manage the uncertainty of what to expect next.
End-of-life care is an umbrella term that refers to the process of addressing all the issues that come into play from medical care, social and emotional support, and the spiritual care that you may need either as the person dying or as a family member.
- Palliative Care
Palliative care begins early during the course of treatment for a life-threatening, serious illness; and it can be delivered at several points of care across the continuum of health care settings. This type of end-of-life care includes institutional long-term care settings (nursing homes and assisted living); home health, acute care facilities, and outpatient clinics. Palliative care has limited funding, and most palliative care programs need alternative funding.
- Hospice Care
Hospice care is comfort care when you reach the point in the disease trajectory where aggressive care or therapies are no longer a viable option. It’s a service delivery system that provides interdisciplinary care for people with limited life expectancy—typically when you’re given six months or less to live.
Hospice care also includes comprehensive biomedical, psychosocial, and spiritual support as you enter the terminal phase of an illness or condition. Hospice care also supports you and your family member(s) in understanding what to expect as death nears. Luckily for people 65 and over or those with a disability, Hospice care is funded by Medicare’s Hospice Benefit.
✔️ What Type of Healthcare Providers Provide Palliative Care?
- Basic Palliative Care
Basic palliative care is delivered by health care professionals who are not palliative care specialists—they are not “certified” in palliative care by a credentialing organization.
Basic palliative care providers can be primary care providers and disease-oriented specialists, such as cardiologists or oncologists; nurses; social workers; chaplains; and other providers (such as physical, occupational, and/or speech therapists).
- Specialty Palliative Care
Specialty palliative care providers are all those same provider types (interdisciplinary team), except they are certified in palliative care by a credentialing organization.
I look back on my career, Hospice was certainly part of the standard of care when I graduated as a nurse practitioner in 2000; but Palliative care was just coming into practice at that time in my area. I was lucky enough to work with a geriatrician who trained us to provide high-quality palliative care. Technically, that made me a basic palliative care provider because I didn’t have a certification in that specialty.
✔️ What Type of Care Does Palliative Care Provide?
- Physical: Physical care has to do with your physical symptoms of either respiratory distress, pain, difficulty breathing, or anything physical that occurs along the disease trajectory and/ or at the end of life.
- Psychological and Psychiatric: Psychological or psychiatric aspects are the emotional support helping you deal with the reality of the situation and any other psychiatric things that might come into play—if you have a longstanding psychiatric illness and/or end up experiencing delirium.
- Spiritual, Religious, and Existential: Everyone has a different way that they connect to their spirituality. The hospice and palliative care team is there to help ensure that all of those needs are met for you.
- Cultural: Many cultural things come with death and dying, from needing to open a window at the moment of death and mourning family and friends around compared to not wanting anyone to see you. The person dying and their family needs to communicate these cultural customs to the team, so they can ensure those needs are met.
- Ethical and Legal: These ranges from advance care planning, deciding on a surrogate decision maker, to making sure that all advance care planning wishes are in writing. If ethical issues come up along the way, the patient and the family’s autonomy is supported.
- Care of the Imminently Dying: This care involves making sure that all symptoms are managed when death is imminent. This includes making sure the person is pain-free, doing what we can do to help with breathing, and talking to the family about what to expect and what changes to anticipate during the final days and weeks of life.
- Bereavement: Bereavement happens after death. This service is to support your family member(s) in dealing with the different complex consequences that a death in the family can cause; and helping support you duing the process of grief and grieving for up to one year after the person dies.
✔️ Help Is Always Available
If you or someone you love are going through end-of-life experiences—help is always available.
How to find a hospice and palliative care provider?
The National Hospice and Palliative Care Organization is a national organization that can connect you to palliative care providers. You can visit their website, enter your zip code or the type of provider that you’re looking for, and you can connect with healthcare providers in your area.
Check out the Medicare website and in the Provider Type section, select “Hospice Care”. Enter your zip code, and then it will tell you what providers are available in your area.
If you have questions, or comments or need help, please feel free to drop a one-minute audio or video clip and email it to me at email@example.com, and I will get back to you by recording an answer to your question.
More Resources About Memory And Alzheimer’s Disease …
This Is Getting Old has several other episodes about memory and Alzheimer’s. You can check them out below:
- EP: 65 – What are the Stages of Alzheimer’s Disease? Part I: Symptoms of Early- and Late-Stage Alzheimer’s Disease
- EP: 66 – What are the Stages of Alzheimer’s Disease? Part II: Symptoms of Late- and End-Stage Alzheimer’s Disease
- EP: 64 – Alzheimer’s Disease and Living Alone: Four Signs Someone May Not Be Safe at Home Alone
- EP: 63 – Alzheimer’s Disease and Driving: Five Signs That It’s Time to Take the Keys
- EP 38: Ten Tips for Preventing Alzheimer’s Disease
I earned my Bachelor of Science in Nursing (‘96) and Master of Science in Nursing (‘00) as a Family Nurse Practitioner (FNP) from the University of North Carolina Wilmington (UNCW) School of Nursing (SON). I truly enjoy working with the complex medical needs of older adults. I worked full-time for five years as FNP in geriatric primary care across many long-term care settings (skilled nursing homes, assisted living, home and office visits) then transitioned into academic nursing in 2005, joining the faculty at UNCW SON as a lecturer.
I obtained my PhD in Nursing and a post-Master’s Certificate in Nursing Education from the Medical University of South Carolina College of Nursing (2011) ) and then joined the faculty at Duke University School of Nursing as an Assistant Professor. My family moved to northern Virginia in 2015 and led to me joining the faculty at George Washington University (GW) School of Nursing in 2018 as a (tenured) Associate Professor where I am also the Director of the GW Center for Aging, Health and Humanities.
Find out more about her work HERE.