Are End-of-Life Doulas for Us?

January 31, 2021

By Marina McGough

 A death positive movement is sweeping across the country and with it, there has been much buzz about the End-of-life Doula. The name is not exactly self-explanatory: doulas are more well known as birth companions. End-of-life doulas are non-medical support persons assisting individuals with their end-of-life journey, with “the labor of dying”, as Barbara Karnes, RN, says. 


In order for healthcare professionals-- especially those in hospice and palliative care-- to fully embrace this role in their scope of practice, it’s important to have an understanding of the doula’s specific skill set and areas of expertise. In the numerous presentations that have been provided by the NHPCO’s End-of-life Doula Advisory Council, there is a recurring theme in the questions and comments we receive: “How does this role differ from a hospice volunteer?” or “Our volunteers and team already do that.”


As the National Director of Volunteer Services for a hospice agency that trains and incorporates volunteer end-of-life doulas into our team, I would like to distinguish between the two roles as seen in our organization. We began laying the foundation for our program in 2017 by first enrolling in a training program and then creating our own with the expertise of an already established End-of-life Doula training company. We were able to launch our End-of-life Doula program in 2018 with a pilot program selecting existing volunteers we felt were ready for the additional responsibilities and were eager to expand the way they served our agency. We then extended this program to all of our agency locations across the country. Our goal for adopting an End-of-life Doula Program was simple: to strengthen our volunteer department, provide continuity of care from pre-hospice to post death, to create better patient and family satisfaction, and provide innovative high-quality hospice care for those we serve. 

"End-of-Life doulas are non-medical support persons assisting individuals with their end-of-life journey, with 'the labor of dying.' ” — Barbara Karnes, RN


What are those additional responsibilities for our volunteer doulas? Our doulas learn more about the interdisciplinary team and how to bridge communication among them. In our training program, volunteers learn doula skills such as mindfulness, presence, legacy work/life review, after death support and how to have difficult conversations. Although many volunteers offer these skills as well, I have seen the increased expertise and skill level of a trained End-of-life Doula. I greatly value hospice volunteers and they are “experts” as well. Volunteers are an essential member of the hospice team: They provide much needed companionship to lonely patients, facilitate special activities like painting, going fishing, or something as simple as going outside to enjoy the sunshine, and sit at the bedside of the dying. What better way to honor them than to provide them with the opportunity to grow and advance their skills. I believe every bedside hospice volunteer might aspire to be an End-of-life Doula if given the opportunity to participate in a training. After completing her first doula workshop, April in New Jersey expressed her observation, 


 “I loved that the training was very experiential. I did not know what to expect and was prepared to have a typical classroom experience. But we learn better and faster when our mind, body, and soul are totally immersed and experience things at a cellular level. As I learned more about being a doula, I also gained a better understanding of who I was, what I needed to work on, and what strengths I have to fulfill my volunteer doula role.” 


Establishing an End-of-life Doula Volunteer Program can be a daunting task for some organizations. You don’t have to build a program or a training to incorporate this discipline for your clients. There are many End-of-life Doulas who provide services independently. Make yourself aware of all the resources in your community. Just as your organization may recommend external agencies to assist clients who need additional services, look to End-of-life Doulas as a community resource as well. As palliative care and hospice professionals let’s be a part of the death positive movement, collaborate with end-of-life doulas and transform end-of-life care for our patients-- for the better.



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Marina McGough is the current Chair of the NHPCO End-of-life Doula Council and the National Director of Volunteer Services at Ascend Hospice. Marina has over 20 years’ experience in Volunteer Management and has worked in hospice for the past 14 years. She completed her training as an end-of-life doula in 2017. Following her training, she worked in conjunction with Quality of Life Care to establish a volunteer end-of-life doula program at Ascend Hospice in all of their agencies located across the United States. She is a current member of NEDA, The National End-of-life Doula Alliance.

Coping With Dementia: 10 steps to gain more cooperation with simple tasks

August 28, 2025
How can we increase the level of cooperation we get from a loved one coping with dementia? A loved one with dementia may resist simple routines that we, as caregivers, need for them to complete so they can maintain proper hygiene or enable us to run a household. It may be a simple task, like taking a shower or getting dressed - or brushing their teeth before they go to bed. A good way to start is to recognize that we are about to face a challenge . Like any challenge we face, it’s best to get ready before we begin. Be prepared! Gather everything that will be needed to complete the task and arrange those things in the order that they’ll be needed. Be sure to have everything at hand that will be needed when the task is completed. For instance, are we brushing our teeth in the morning? Have the bathing set up as the next task or be ready to dress and go to the dining table. Have patience, remember that this will take longer than normal. Budgeting more time will reduce your own stress, and that is key in reducing theirs. Remember, they are cognitively disabled . It’s frequently not that they’re resisting your instructions, it’s simply that they are having difficulty processing them - it will take them longer to understand and cooperate than normal. One of our biggest goals is to avoid making them feel pressured, rushed or agitated . Maintaining this level of structure will be comforting to your loved one and will decrease confusion and stress. It will also reduce distractions that might be inadvertently introduced by being less than organized. We may be doing something simple, but it’s no longer simple to a loved one suffering from dementia. Have you ever assembled a piece of furniture from IKEA? Keep that in mind – you needed step by step instructions. Did they always make sense as you progressed? Nope. Did you ever get frustrated? You bet. This is the same thing. Give them simple steps, one step at a time . Think from a new perspective. “Let’s go brush our teeth,” doesn’t really lead them to beginning or completion. How about: 1 - let’s go to the bathroom 2 - can you stand in front of the sink? 3 - let’s rinse your toothbrush - we need to make sure it’s clean! 4 - perhaps try doing your own side by side as an example 5 - can you open the toothpaste now? 6 - squeeze a line of toothpaste onto your brush, like this, see? 7 - now, put the toothbrush into your mouth, brush like I’m doing 8 - top now - left side, center, now on the right - inside, like this 9 - bottom now - left side, center, now on the right - inside, like this 10 - now, we’re almost done. Take your brush and rinse it 11 - put the brush back into the holder 12 - put some water in the cup 13 - now just rinse your mouth 14 - spit the water back into the sink Try to let them do as much on their own as possible. It will build confidence and reduce their stress, step in and help as needed. You’ll see for yourself how deeply you need to break down tasks and learn from their responses when to help, praise or comfort. Try not to take over and do steps for them when they may be able to complete the step themselves. If they are able, that may convey impatience. We’re trying to encourage a sense of competency and autonomy - even if a step is not taken perfectly. To learn more about dementia and Alzheimer’s disease follow these links. 1 - https://www.ascendhealth.com/coping-with-alzheimers-anxiety-and-depression 2 - https://www.ascendhealth.com/alzheimers-caregiving-7-signs-its-time-for-extra-support 3 - creating dementia-friendly documents https://bit.ly/3H9g6WD Our teams offer specialized care for those living with end-stage dementia and Alzheimer’s. Our supportive team focuses on improving quality of life and easing the distressing burdens of Alzheimer’s and related dementias. Learn more about how we can help bring comfort and support by reaching out to a member of our compassionate team.

Gene Hackman’s Final Lesson: A Wake-Up Call for Caregivers and Families

June 30, 2025
A few months ago, beloved actor Gene Hackman and his wife, Betsy Arakawa, were found deceased in their New Mexico home. Investigators believe Arakawa passed away first—possibly up to a week before Hackman. Shortly before her death, she had reached out to a local clinic . Later, Hackman’s pacemaker data helped confirm the timeline of his own passing. The medical examiner determined that Arakawa died from hantavirus pulmonary syndrome , a rare and dangerous respiratory illness transmitted by rodents. Hackman died from advanced heart disease , with Alzheimer’s disease contributing to his decline. Experts suggest that his cognitive impairment likely prevented him from recognizing Arakawa’s death—or, if he did realize it, he may have experienced confusion, heartbreak, and helplessness before ultimately passing away himself. We may consider Gene Hackman’s last role to be his final lesson, a wake-up call for caregivers and families. It’s a profoundly tragic story—one that reflects a reality many families quietly face. As our loved ones age, especially when one becomes the caregiver, a sudden health crisis can leave the other stranded in a dangerous situation. What Can We Learn? This heartbreaking story offers more than grief—it offers perspective. It’s a reminder to be proactive, observant, and involved in the lives of aging loved ones. Here’s ways we can help. 1. Know the Conditions Affecting Your Loved Ones In Hackman’s case, the central health challenges were heart disease and Alzheimer’s. Recognizing the signs of heart trouble—chest pain, fatigue, breathlessness—and understanding how dementia can mask or confuse those symptoms is critical. 2. Caregivers Need Care Too When the caregiver goes down, the one who relies on them is suddenly exposed. Arakawa’s sudden illness likely left Hackman alone, disoriented, and unable to seek help. Caregivers often suffer in silence, pushing past their limits. Regular check-ins and support for them are just as essential. 3. A Simple Visit Can Save a Life A timely visit from a friend or relative might have changed the outcome. Subtle signs—rodent activity, spoiled food, confusion, hygiene issues—could have triggered help before it was too late. Don’t underestimate the power of simply showing up. What to Watch For: A Family Checklist If you have aging parents, relatives, or friends, here are some key areas to keep an eye on: Physical Health • Sudden weight loss or gain • Bruises, burns, or signs of falls • Unkempt appearance or body odor • Difficulty walking or standing Cognitive & Emotional Well-being • Memory loss or repeating questions • Depression, anxiety, or social withdrawal • Unsafe behavior such as leaving appliances on • Unusual mail or phone activity Home Conditions • Spoiled food, pest presence, or clutter • Safety hazards (dim lighting, loose rugs) • Appliances or plumbing not working Nutrition & Kitchen Safety • Expired food or low food supply • Dirty or neglected kitchen tools • Avoiding cooking altogether Medication Compliance • Confused about medications or missed doses • Expired or improperly labeled prescriptions Social Interaction • Isolation or reluctance to leave the house • Loss of interest in hobbies or community involvement Financial Awareness • Unpaid bills or unopened mail • Signs of financial exploitation or scams Tech & Communication • Can they use a phone in an emergency? • Are they responsive to calls or messages? What To Do If You Notice a Problem If you see red flags, don’t panic—but don’t ignore them either. Start with an honest, caring conversation. Explain that your concern comes from love, not judgment. Then, consider next steps: • Schedule a check-up with their doctor • Bring in help, even part-time support • Assess whether the home needs modifications • Explore new living arrangements if necessary Whether it’s weekly dinners, video chats, or simple texts—stay involved–consistent contact keeps you in tune with your loved ones’ needs and builds a safety net they may not even know they need. Final Thought If Gene Hackman’s last role is to serve as a final lesson, it’s a wake-up call for caregivers and families. Gene Hackman’s final days are a sobering reminder: Don’t wait until something goes wrong. Aging can be beautiful—but it also comes with risk, especially in solitude. Let this story motivate you to reconnect, check in, and truly see how your loved ones are doing. Additional Resources: Learn more about Congestive Heart Failure: https://www.ascendhealth.com/caring-for-a-loved-one-with-chf-this-summer https://www.ascendhealth.com/caring-for-a-loved-one-with-chf Learn more about dementia and Alzheimer’s disease: https://www.ascendhealth.com/alzheimers-caregiving-7-signs-its-time-for-extra-support https://www.ascendhealth.com/coping-with-alzheimers-anxiety-and-depression Need a health or safety assessment for a loved one? Contact Us or call today.