End of Life (EOL) Pathways
My next of kin are not the best fit to make decisions on my behalf at the end of my life. How can I legally appoint someone else?
You have choices.
In an event that you are unable to make your own health care decisions, your health care providers will rely on others to decide on your behalf. Under Oregon law, these individuals have priority for health care decision-making, whether they are the best fit to align your values with those decisions, or not. You have the right to a Domestic Partnership legal status in Oregon as well, which would provide the same rights as a spouse in relevant health scenarios.
In Oregon, a legal document called an Advance Directive gives you a voice in your medical care, allowing you to choose what kind of life-saving treatments you prefer or reject, and also allows you to assign someone to represent you. This person is called your Health Proxy. Once you have completed this document, it is recommended that you provide a copy to your doctor for your medical records, keep a copy easily available in your home, and give one to your proxy.
Want to learn more about the form? The Lane County Law and Advocacy Center answers some common questions in simple language, and the Oregon Health Authority goes a deeper into the legal guidelines.
Where do I obtain an Advance Directive? You can find these forms at your local hospitals and clinics, or download one from the OHA. Multiple languages are available.
June’s Thoughts: There’s much to consider when filling out this document. Please don’t let the weight of the paperwork and legalese turn you off from the process. If this is happening, reach out to a friend, find a local Death Doula or small community group who can meet regularly to go over the sections together until it’s completed. I found this guidance by Cedars Sinai to be the easiest to navigate. Give it a try!
My loved one has expressed that they want to die at home in hospice care. I want to make sure this is the right decision for both of us. Where do I start?
Sooner or later, many of us will become caregivers.
In 2021, an estimated 36 billion hours of unpaid caregiving was provided to adults who needed support with daily activities; this unpaid care was provided by 38 million individuals consisting of family members and “inner circle” caregivers (Source: AARP)... Many never imagined themselves in that role—it just sort of happened. - caringinfo.org
June’s Thoughts: Dying at home requires a constellation of support that takes shape based on what is accessible, affordable, and also what expectations all parties bring to the experience. The more time you can invest in this discovery process, the greater the chances that your understanding will align with what is actually possible financially, energetically, physically and emotionally. As your thoughts and feelings shift on this journey, you can then accept that you have done what you can to prepare yourself to face inevitable uncertainty. Head here for books I recommend for this journey.
The following are just suggestions:
First, ask your health support team if they can recommend local resources and then create a list of who you would like to consider to be part of your Circle of Care: a collaborative team of health & other professionals, family, friends and community organizations. This Circle of Care approach aims to reduce stress for primary caregivers and ensure comprehensive support through shared communication and decision-making. No one should try to be a caregiver in isolation, even if hospice is available.
Second, visit the National Alliance for Care at Home’s helpful website Careinfo.org It walks you through the steps of considering what you need, when you need it and what it might cost.
Third, find out what kind of services your insurance will cover. Most insurance companies, including Medicare and Medicaid cover hospice services and palliative care.
Fourth, consider finding a local Death Doula who may be able to provide non-medical support. Some places to start may be reaching out to local doula organizations like The Peaceful Presence Project, or NEDA and INELDA directories.
Finally, in Oregon we have the legal right to choose Medical Aid in Dying services if our situation aligns with guidelines. If you would like to explore this option to see if it may be right for you, a good place to start is with End of Life Oregon, an organization set up to provide support and information regarding the Death with Dignity Act, as well as other legal services like Voluntary Stopping Eating and Drinking(VSED).
Palliative and hospice care are born from the same nurturing instinct: that your physical, spiritual and emotional care should receive full attention. They are chiefly concerned with how you are feeling.
Palliative Care is patient-and family-centered care that optimizes quality of life and treats suffering. It is for anyone at any stage of a serious illness, whatever the prognosis, and is intended to be delivered concurrently alongside other treatments, services, and primary care. Most modes of palliative care are covered by medical insurance are available in most hospitals, and recently have been popping up outside of the hospital, in clinics and even at home. (Note: Some programs are sidestepping the name palliative care and calling themselves symptoms management or supportive care services. Same animal, different name.)
Hospice Care is designed to treat physical, emotional and spiritual discomfort for patients with a life expectancy of six months or less. In other words, hospice is a kind of palliative care but designed explicitly for the last stages of life. By this time, aggressive treatment is generally no longer helpful. Therefore, replaceing the goal of a cure with that of comfort is generally a condition of your enrollment.
Think of hospice and palliative care a trusty tag team. Palliative care can start early on, as soon as you feel the need for more support; then, hospice can (literally and figuratively) bring you home. Both are designed to ease suffering and optimize quality of life, and both are multi-disciplinary, bringing together expertise from medicine, nursing, social work, and chaplaincy, among others.
The idea is not dying per se, but living well until you do.
Palliative & Hospice: A Trusty Tagteam
An excerpt from Beginners Guide to the End, Miller and Berger
June’s thoughts: Something to keep in mind is that hospice is a type of care that is delivered wherever you call home, not a place you go for care. The medical support comes to you, but unless you are in a residential hospice facility, you won’t receive around the clock care for all of your basic needs. A hospice nurse may only visit your home once a week if there isn’t a crisis. That’s why consistent, supportive caregiving is essential to home hospice care. It’s also not infallible. It is a business within the same stressed health care system that is suffering from shortages, burnout and fraud. With that said, it can be a valuable service and there are ways to find the provider that is right for you.
If we are prepared with reasonable expectations and ask good questions, we can and may arrive at an acceptable outcome. When choosing a hospice provider, ask about the frequency of nurse visits and the availability of a 24/7 hotline. Some not-for-profit hospice services also have the ability to utilize volunteers and there may be more support services available as a result, even death doulas.
I’m not sure how to navigate discussions with my family about EOL choices. I know it’s important, but I’m nervous. Strategies?
Why is death and dying so hard to talk about? by St. Clare Hospice
Talking about death and dying can be one of the most difficult conversations to have- especially with our loved ones. It is okay to feel scared about approaching the topic, whether you are voicing your own thoughts and feelings about death or asking a loved one to open up about how they feel.
Usually, it is not until something ‘significant’ happens in our lives that we begin to ponder death and dying. It could be anything from having children, to receiving a medical diagnosis. It could simply be the realisation that we, or our family members, are getting older. It is at this point – when talking about death and dying becomes a reality that we have to face – that many of us find we feel anxious and unsure.
The hardest part of talking about death and dying is accepting our mortality: the fact that we, and our loved ones, will eventually face death. Naturally, it is a scary thought! Most of us have no idea what to expect and we don’t know when it will happen, either. A lot of the time, we’d prefer not to think about it, and ‘cross that bridge when we get to it’.
But the truth is, talking about death can help us to alleviate our fears and feel a bit more prepared. It does not, of course, bring death closer.When we keep avoiding the topic, it perpetuates our ‘fear of the unknown’. However, by exploring all the different possibilities, and our thoughts and wishes, we are able to come to terms with the fact that it will happen one day, and start planning for how we want it to be.
Another worry that stops us from talking about death and dying is causing upset to ourselves and others. It is normal that talking about death and dying with our friends and family can uncover emotions that might be tough to deal with. Yet, showing emotion doesn’t have to be a bad thing. It is expected that no one wants to lose their loved ones, or leave their loved ones behind.
We avoid conversations about death and dying because we feel frightened of what we may hear, and anxious that we may not be able to handle a conversation emotionally. We worry that we won’t be able to put things back together again if we create emotional upheaval.
Even having conversations about Wills can bring about worries of being ‘money-grabbing,’ so we avoid the topic. We shut down conversations and say, ‘don’t talk like that, you’ll be around for years yet’.
Perhaps we have never been a talker, and we don’t want to start now!
Sound familiar? Don’t worry; all of these feelings are completely normal, and most of us experience them. The best thing we can do is try to work through them, so that we can talk about these important things with our loved ones.
The following excerpt is from the helpful book,The Beginners Guide to the End, by BJ Miller and Soshana Berger.
Not everyone is eager to discuss the end of their life, and springing the topic on someone over a casual coffee might feel like an ambush. One way into the conversation is to bring up someone in the family or a close friend who died and ask what they took away from the experience. Often it’s easier to say what we don’t want.
Say something like: “Remember when we visited Aunt Genie in the ICU? She had five tubes coming out of herand didn’t seem to know where she was. That was really hard to see, but maybe that was what she wanted. How did you feel about that? Is that what you’d want?”
...Or use your own wishes as a springboard: “Mom, it’s important to me that you know what I would want if something happened to me.’ Share first, and then ask them if they’ve thought about their own wishes.”
June’s Thoughts: Here are some other online resources to consider when preparing to have a conversation:
This article describes the process and preparation for “first conversations” with others after receiving a serious illness diagnosis, but might be helpful even if you are not facing this scenario.
This hospice guide was created by a hospice team to help patients approach tough conversations.
The Conversation Project may be helpful resource for you. If you have a serious illness and you are seeking to explore your own needs and wishes so that you can have a clear conversation with doctors and family members about them, visit The Conversation Project’s online workbook What Matters to Me.
Or…
Maybe you’d like to talk to another human being about this topic instead of reading? Consider reaching out to a Death Doula in your region. Doulas can be helpful in many different ways as we journey through transitions in life, as well as at the end. Try starting with directories at NEDA, INELDA or the Peaceful Presence Project.
I’d like to learn more and begin talking with others about these topics, including grief. I’m ready, but how do I start?
June’s Thoughts: There are so many more opportunities to read, listen to and converse with others about the topics of death, dying and grief than there were when I first started this work. Since Covid, the interest and people in conversation has grown and I’m grateful for it.
Social Media: If you’re on platforms like Instagram or Facebook, you can search for end-of-life, death or grief organizations and doulas offering experiences in your area. In person opportunities tend to be in larger communities, but many are offering virtual or online ones as well. You’ll find many folks offering virtual book clubs, which can be a good way to converse and connect while learning.
Death Cafes: Death Cafes have been around for over a decade and are an informal way of bringing small groups of people together to discuss death while enjoying a beverage and dessert. I have found them to be a very satisfying way to connect with others and break through the isolation we may sometimes feel exploring these topics, with low risk and safe boundaries. Find out who is hosting one near you or online.
Community Groups: Check the event calendars at your local community centers like senior centers, libraries, and local hospices for offerings. You’re likely to find both in person and online opportunities. There are also group centers popping up in places like Portland that offer grief support and sharing opportunities like The Grief House. If you’re seeking grief education or support for youth who have experienced loss, I recommend Dougy Center in Portland.
Online Opportunities: Reimagine is an organization whose mission is to help people transform pain into purpose, grief into growth, and life's challenges into connection. They have many opportunities for online connection over Zoom anchored in these topics.
Visit my list of books, podcasts, and resources here for more self-paced learning and I will be offering some opportunities of my own this coming Fall 2026.