A Compassionate Guide to Palliative & Hospice Care with Annie Brashem, LCSW
Healthcare, especially care that revolves around difficult topics like death and dying, is often filled with confusing terms that make our heads spin.
Like palliative care… It kind of sounds like a spa day, maybe? But then all of a sudden, we’re talking about serious illness, and it’s not so relaxing anymore. In this post, we’re untangling some of the confusing aspects of palliative and hospice care so that you can feel more informed, empowered, and prepared.
Annie Brashem is a licensed clinical social worker in the state of California with a passion for helping people navigate palliative and hospice care. I interviewed her on episode 70 of The Chronic Illness Therapist Podcast to share more about the options available for both ourselves and our loved ones when living with terminal illnesses.
Palliative Care
When most people hear palliative care, we immediately think about end-of-life. We might even think it’s synonymous with hospice. And we might also have an image of a sickly person giving up. But that’s what the movies depict - not necessarily what this type of care looks like in real life.
In reality, palliative care addresses the question:
“How do you live your fullest life possible no matter what your prognosis looks like?”
This is an important distinction to make. As Annie explains in the episode, palliative care can be given to someone who is still undergoing life-saving treatments, unlike hospice care. The main focus, though, in palliative care is to make one’s life as comfortable as possible rather than focusing on curing the disease.
It’s about having an extra layer of support to help you actually show up for your life - even when you're going through something incredibly difficult.
Palliative care can be initiated at any point in one’s illness journey, including:
at the initial diagnosis
anytime throughout treatment
or even after treatment has ended.
The services included in palliative care vary widely from program to program (since this isn’t a federal program). To learn about the specific benefits that your local program offers, make a phone call to organizations near you and ask for information about their offerings and pricing.
Hospice Care
It’s easy to feel pretty scared when you hear hospice because it highlights the reality that death is close.
Hospice is a type of palliative care in which the patient is no longer utilizing life-saving treatments and is allowing themselves the comfort and dignity they deserve in their final weeks and months of life. Because hospice is covered by Medicare, there are more similarities between programs across the country than there are with palliative care programs.
Hospice is meant to serve as a safety net of support - for both the person nearing the end of life and for their family and loved ones.
Myths About Hospice
Let’s clear up some misconceptions about hospice.
Myth: Hospice looks like someone laying in a hospital bed with a morphine drip hooked up to their arm.
Truth: Pain management relapse is certainly important, but it's not just about medication. Hospice focuses on the whole person, not just physical symptoms. This includes addressing emotional, spiritual, and social needs.
Myth: Hospice is only for the last few days of life.
Truth: Hospice care can be provided for months before the end of life, typically when a person has a life expectancy of 6 months or less. Earlier enrollment allows patients and families to benefit more fully from hospice services.
Myth: Choosing hospice means giving up hope.
Truth: Hospice shifts the focus to quality of life rather than curative treatment. It provides hope for comfort, dignity, and meaningful time with loved ones.
Myth: Hospice care is only provided in a facility.
Truth: Hospice care can be provided wherever the patient calls home - their house, a nursing home, or an assisted living facility. Some hospice organizations also have inpatient facilities for short-term stays when needed.
Myth: Once you start hospice, you can't change your mind.
Truth: Patients can choose to leave hospice care at any time if they wish to pursue curative treatments or for any other reason. They can also re-enroll later if eligible.
Myth: Hospice is only for cancer patients.
Truth: Hospice serves patients with any terminal illness, including heart disease, dementia, lung disease, and many others.
Myth: Hospice means 24/7 care.
Truth: Around-the-clock nursing care isn't automatically included in every hospice plan, but it can be provided if it's medically necessary. The hospice team works closely with the patient and their family to figure out what they need, and then they create a plan that provides the right level of support.
Making the Best Use of Time During Palliative + Hospice Care
Before Palliative Care Begins
In Episode 70 of The Chronic Illness Therapist Podcast, Annie and I talk about the importance of having conversations with your doctors about palliative care as early as possible.
You might find that your doctor is dismissive of this request, especially if they don’t think you’re ready for palliative care yet. If this happens to you, please keep this in mind: your doctor probably isn’t trying to be rude.
They’re trying to get through one thing at a time, and they have about 15 to-do items on their mind at any given minute. They’re just not going to naturally understand why this topic, which is ages away for them, is so important for you right now.
So you must teach them.
You can teach your doctor about what’s important to you in one very simple way: keep asking.
You can let them know that you understand that they think palliative is far off and that you’re thankful that it’s so far away. However, you’d like to get in touch with the people who can educate you about services well in advance so that you know what your options are when the time comes.
If a doctor still does not respond to you in a helpful way, you can reach out to different programs in your area. Before entering a program, you want to consider which aspects of life are most important to you.
To find a program near you, check out The National Alliance for Care at Home’s website, which will list programs closest to your home. Call these organizations and start asking questions, such as:
1. What services do you offer to patients and families?
2. How do you manage pain and other symptoms?
3. What kind of support do you provide for family caregivers?
4. How quickly can you start services once we decide?
5. Are your staff available 24/7 for emergencies?
6. Do you have experience with my specific condition?
7. What are your policies on using life-prolonging treatments?
8. How do you respond to a patient who wants to stop hospice care?
9. What kind of bereavement support do you offer families?
10. Are your services covered by Medicare, Medicaid, or my private insurance?
Other ideas to consider:
Visiting the hospice facility (if applicable) to get a feel for the environment
Asking for references from families who have used their services
Checking to see if the hospice is Medicare-certified (even if you don’t have Medicare) since this ensures they meet specific quality standards.
Remember, it's okay to talk to multiple palliative and hospice providers before making a decision. The goal is to find a program that aligns with your values and can best support you and your family during this time.
Lastly, while the National Alliance for Care at Home is a valuable resource, you might also want to check with your doctor, local hospitals, or state hospice organization for additional recommendations. Each of these sources might provide different perspectives or options to consider.
Tip: Keep a notebook for your medical care questions and answers. (If you’d like a blog post about which information to keep in your notebook, leave a comment below.)
During Palliative and Hospice Care
Depending on the services provided by your palliative or hospice care organization, here are some things you can expect to see or experience during your palliative care or hospice care time:
Palliative Care:
Symptom management beyond pain: This includes managing other symptoms like nausea, shortness of breath, or anxiety, often through a combination of medical and non-medical approaches.
Case Management/Coordination with your primary care team: Palliative care specialists work alongside your regular doctors to provide an extra layer of support in carrying the mental load that you inevitably have to deal with during this time.
Emotional and psychological support: Counseling services for you and your family to help cope with the challenges of serious illness.
Help with medical decision-making: Assistance in understanding your condition, treatment options, and making choices that align with your goals.
Spiritual care: This support is offered but never imposed. It is an available option for those who want a spiritual counselor to support them in their thoughts, concerns, and hopes about life and the afterlife.
Social services: Help with practical matters like arranging transportation to medical appointments or connecting with community resources.
Hospice Care:
Regular home visits: Nurses, aides, social workers, and other team members visit regularly to provide care and support in your home or at the facility you’re staying in.
24/7 on-call medical advice: This advice and assistance is available when deemed medically necessary.
Medical equipment and supplies: Necessary items like hospital beds, wheelchairs, or oxygen equipment are provided.
Medication management: Supply and management of medications related to the terminal illness.
Personal care: Help with bathing, dressing, and other daily living activities.
Volunteer services: Companionship, respite for caregivers, and help with errands.
Therapy services: Physical, occupational, or speech therapy if needed to promote comfort.
Dietary counseling: Advice on nutritional needs and eating problems that often occur during this time.
Bereavement support: Grief counseling for family members before and after the patient's death.
Short-term inpatient care: If symptoms can't be managed at home, some hospices offer inpatient facilities for temporary stays.
Both palliative and hospice care focus on improving the quality of life and honoring patient wishes.
When Hospice Care Ends
In most cases, hospice care ends when a loved one has passed away. Bereavement counseling is offered for a year after your loved one’s death through Medicare hospice programs, and as a therapist, I highly encourage you to utilize this service.
Additional Reasons Hospice Care Ends
The patient’s physician and the hospice medical director certify that the patient’s condition has improved enough to no longer be considered terminally ill or their life expectancy has lengthened to longer than 6 months.
The patient might change their mind and decide to leave hospice for any reason, including the decision to pursue life-saving or curative treatments.
“Discharge for cause” - In rare cases, a hospice might discharge a patient for disruptive or abusive behavior, though this is uncommon and usually a last resort.
It's important to note that if a patient leaves hospice and their condition later declines, they can re-enroll in hospice care if they meet the eligibility criteria again. The decision to end hospice services (except in the case of death) is always made in consultation with the patient, family, and medical team to ensure the patient's needs and wishes are being met.
The Emotional Impact of Palliative and Hospice Care
Palliative and hospice care goes far beyond tangible and physical care. This form of care also profoundly impacts emotional and mental well-being in these challenging stages of life.
Autonomy
Autonomy is a core, universal, foundational need for all humans. Our mental health usually suffers when choice is taken away.
That’s why palliative and hospice care are so important for a loved one who’s dying. If the goal is to make the person who is dying as comfortable as possible, the ability to choose must be a part of the plan.
Carrying The Load
Being able to spread the mental, physical, and emotional load of what’s happening between a team of medical professionals who wholeheartedly understand the dying process is invaluable.
Communication
Learning how to communicate effectively, assertively, and compassionately is a skill that can be learned at any age. Therapists are especially skilled at helping you through this so that you can be more successful in obtaining the support you need.
In Episode 70, Annie discusses the power of communication, learning to cope with uncertainty, and finding strength despite feeling scared. These are topics we don’t talk about enough - but we should!
Annie reminds us that it's okay to feel scared, to feel frustrated, and even angry. It's all part of the process.
And the more we know, the more we can advocate for ourselves.
The more we understand our options, the better decisions we can make. And it can be as simple as just asking questions.
You don't have to do this alone. If you take one thing away from this conversation, let it be that. We hope you feel a little more equipped to start talking about your health and the health of your loved ones.
Because at the end of the day, it's all about living well, whatever that looks like for you.
As a closing thought:
Knowing what you know now, what small step can you take today to feel more empowered in your own healthcare journey?
Additional Resources:
*We discuss these resources in the podcast, but they are not explicitly mentioned in this post. We encourage you to explore them for more information to support you in your healthcare journey!
https://prepareforyourcare.org/ is a tool to help you plan and prepare your medical decisions. This can (and should) be done now, even if you’re not currently living with a chronic medical condition.
https://compassionandchoices.org/ is an organization where you can learn more about medically-assisted death.
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Episode transcribed with AI and will contain errors that are not representative of the actual word or meaning of the sentence.
[00:00:00]
Everyone. I just wanted to remind you that we are collecting money for the farmer fund, which is going to support farmers who are impacted by natural disasters, which is so important and necessary. For not only their livelihood, but also for us and rebuilding our food supply chain.
The farmer found directly, goes to farmers in the Southeast. And that's particularly helpful right now after the aftermath of hurricane Helene. Particularly in Asheville and around the North Carolina area.
Any Rasham is a licensed clinical social worker in the bay area in California. And she works directly with people and their loved ones. Who've experienced many different types of illnesses and medical events. She's journeyed alongside people in outpatient, palliative care. Acute care, hospitals and skilled nursing facilities. Her passion is accompanying those facing neurological conditions like Parkinson's stroke, dementia, ALS. Multiple sclerosis and neuromuscular conditions, as well as those [00:01:00] dealing with cancer, heart and lung problems, kidney disease. Auto-immune disorders and more. While illness and caregiving are universal experiences.
Any believes that it's an extraordinarily rich time to engage in therapy and find meaning and purpose in ourselves, our relationships. Our life histories and hope for the future.
And today's episode, we talk all about palliative and hospice care. And this of course means we are talking about death and dying. Towards the very, very end of the episode. We do also talk about medical aid. And dying.
And so if this is hitting a little too close to home for you, and you're not in a place to be listening to this episode right now, please do skip this episode. Additionally, if you are struggling with any thoughts of harming yourself or harming somebody else, and you do want help and support in moving out of that space, please call or text nine, eight, eight, which is our national suicide hotline. And they can get you the help that you need.
The Chronic Illness [00:02:00] Therapist podcast is meant to be a place where people with chronic illnesses can come to feel heard, seen, and safe while listening to mental health therapists and other medical professionals talk about the realities of treating difficult conditions. This might be a new concept for you, one in which you never have to worry about someone inferring that it's all in your head.
We dive deep into the human side of treating complex medical conditions and help you find professionals that leave you feeling hopeful for the future. I hope you love what you learned here and please consider leaving a review or sharing this podcast with someone you love. This podcast is meant for educational purposes only.
For specific questions related to your unique circumstances, please contact a licensed medical professional in your state of residence.
Destiny Davis LPC CRC: Why don't you start by telling us, you know, who you [00:03:00] are, what you're doing, where you are, and, um, anything that feels relevant before we kind of get into the hospice and palliative care topic.
Annie Brashem LCSW APHSW-C: Yeah, so, , I'm Annie. I'm a therapist in California in the San Francisco Bay Area. And I work only with people with serious or chronic illness and caregivers and also loss, bereavement, um, in my private practice.
And I spent the last decade or so working in medical, social work, and mostly palliative care as a palliative care social worker. Doing home visits and clinic visits, um, telehealth. And I find it just really important to like you were saying dispel the myth. I think that palliative care and hospitals can be really scary for people with with illness. Um, and I don't think it needs to be that way. I would love
Destiny Davis LPC CRC: to hear more about that. What makes it less scary?
Annie Brashem LCSW APHSW-C: Um, Let's see. We can [00:04:00] start with just like what is the difference.
Yeah. So palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness.
The goal is to improve quality of life for both the patient and the family. So, Yeah, go ahead.
Destiny Davis LPC CRC: No, please, please. Um, well, I, yeah, so I'm, and am I right in that palliative care is, so it's still for, you know, serious illness, terminal illness as well. Does it always have to be terminal or not always?
Annie Brashem LCSW APHSW-C: Yeah, so I think that's the hard thing in talking about palliative care is that it's, Because it's not super regulated by Medicare and Medicaid, um, a lot of programs are different throughout the country.
So, like, I know what the programs are in my area, but that might be different around the country or different health systems in the same area might have different palliative care programs. [00:05:00] Um, so it's hard to make a super specific answer, but. I would say life limiting illness is kind of a. Kind of a general term.
So for the program I used to work for, we generally saw people who did have their illness was life limiting within the next possibly couple years, maybe, but the very traditional broad palliative care is just anyone with a serious illness that's impacting them. So that would be as broad as we can go.
It's just with limited resources. I think a lot of programs are focusing on people that might have more limited. Life expectancy. That makes sense.
Destiny Davis LPC CRC: That brings up a lot of thoughts for me. Yeah. I'm sure. I'm sure. Yeah. Yeah, because I'm like, man, how many of us would not progress more if we just had proper support?
Yep. Yeah. Yeah, maybe [00:06:00] we can go down that road. Maybe you can talk. Yeah, what so every palliative care is different, but what are some of those parts and benefits like what, um, depending on the program, people might expect to gain what.
Annie Brashem LCSW APHSW-C: Yeah. Um, so generally palliative care teams are interdisciplinary so doctors nurse practitioners or PA's, um, nurses, social workers, that's kind of the standard, I would say, and then other programs might have.
A pharmacist or a chaplain or physical therapy, um, or, you know, a variety of other services that they provide, um, or specialists that you can meet with. And it really takes like a whole person, whole family approach. So, um, I always used to tell people, can't we won't know, and I can't come in and say, this is what we're going to do.
Because I really want to get to know you what's important to you. What are you needing? And then we customize the care to that. So maybe that's. Um, really [00:07:00] taking a deep dive into your medications and figuring out, do we need all of these medications? Can we adjust the medications? We add some medications.
Maybe that's providing counseling or resources from the social worker. Maybe that's answering your questions about what your illness is, what to expect. We have a lot of time to really. dive deep into that. Our appointments would be at least an hour sometimes, um, to answer all of your questions, communicate with the other members of your medical team, kind of like what you would expect and want illness care to be,
Destiny Davis LPC CRC: but
Annie Brashem LCSW APHSW-C: isn't in the rest of the health care system.
Destiny Davis LPC CRC: That's exactly what I'm gathering.
Annie Brashem LCSW APHSW-C: Yeah. Yeah.
Destiny Davis LPC CRC: I'm glad the resources are there for those suffering the most. I think that's important and I just keep wondering what we can do to just make this a cultural norm. Right. Right. Our care is just more like that. But so maybe we can say a little bit more [00:08:00] about, um, the difference between that then and hospice.
Annie Brashem LCSW APHSW-C: Yeah. So with palliative care, I think of it as like an umbrella term for caring for people with serious illness. And you can have palliative care. I think this is one of the biggest myths is you can have palliative care while receiving active treatment. So if you have cancer and are having radiation or chemotherapy or immunotherapy, you can have palliative care.
Surgeries, any myth, like there's no rules per se. Um, regarding your care. It's alongside your regular medical care. It does not take over or change your regular medical care. It's an added layer of support. Hospice is a subset of palliative care for people who have two, um, meet two criteria only. One criteria is that they have a limited life expectancy, so you hear that six months or less, which, again, is a whole thing we can talk about, but an approximation we would [00:09:00] anticipate, um, of life expectancy.
That's one. And two is that you want comfort focused medical care, provided where you live. So when people are wanting hospice care, they are saying, I want to allow the natural process of my disease to unfold. Um, we're not trying to hasten death. We're not trying to prolong life, allowing the natural process, but that doesn't mean we can't provide lots of treatment and care.
There's always lots of things we can do. I think that's the main difference. Also, I guess hospice is a set through Medicare. So, through the federal government, it's a set of services, um, the Medicare benefit and then. If you don't have Medicare, it's, they kind of fall, those insurance companies kind of follow the same model. So it's a, it's a very specific set of services, and you're going to find a lot more, uh, consistency, I think, around the country, though there's still differences.
Destiny Davis LPC CRC: Okay, that [00:10:00] makes sense. That makes sense. So, it's focused on comfort. So, for example, that might mean, I'm not taking medication to prolong my life. I'm not doing chemotherapy if I have cancer. I'm not doing chemotherapy if I have cancer. Um, but I am getting a morphine drip. Is that accurate? Yeah. So
Annie Brashem LCSW APHSW-C: I think that's another big, um, big question a lot of people have and a big myth is that like hospice equals morphine or hospice equals pain management.
And that can be part of it because they want to, um, improve quality of life and reduce suffering. So if you're in pain or having symptoms and they would provide medicine and other supports to help. reduce that. But if you're not having pain or not interested in that, there's no requirement. And I would say the vast majority of people don't have a drip per se.
They would take like maybe, or like med, um, pills or liquid or something. So
Destiny Davis LPC CRC: can [00:11:00] you paint the picture then, what that does look like? Especially, obviously, movie scene, you know,
Annie Brashem LCSW APHSW-C: drip.
Destiny Davis LPC CRC: Can you paint the picture like we were watching a movie? Like, what would that look, what would those scenes look like?
Annie Brashem LCSW APHSW-C: Yeah, that's a, that's an awesome question.
I don't think I've ever answered that, so it might, might stumble on it. But, um, I think there's a bunch of different ways it can look. So, um, some people go on hospice and they're still really active, right? They might be Just deciding, you know, I don't, I'm not going to have another round of chemo or I'm, um, there isn't another treatment that can be offered to prolong my life for whatever illness.
So they are actually still getting up and going out and, Going to the grocery store, golfing, like there's functionally they're doing well, maybe, um, and the benefit of that is that you get to know your hospice team, they come visit you at least weekly, and then when things are kind of happening, you already have that relationship and [00:12:00] feel that trust.
So, that can, yeah, yeah, and I think that's another myth is that people think, oh, okay, I need to sign up for hospice in my last days or weeks of life. Yeah, and really hospice can be provided for months or. years, that six months can be prolonged if you still qualify. So that's one image is like, just kind of someone who's still living a living life well.
Um, I mean, there's, that's a difficult term, I guess, but still kind of our standard, like going out doing stuff.
Destiny Davis LPC CRC: Um, yeah. What you're describing is building a relationship with your medical professionals and that in and of itself. I mean, it's so that already is so therapeutic to know that there's a team around you that you trust because you've been with them for a while.
Oh, and when it does get to that point, which is already scary enough, there's a resource around you like, I trust what's around me and I, I can move through [00:13:00] this better and more easily, um, than had I, if I just was around 10 new doctors or people that I just don't even know. And now expect that they're going to what, like help me the right way.
Like,
Annie Brashem LCSW APHSW-C: yeah. So, yeah, no, totally. Totally. It's, um, it's. It's a super important part of the process and also the the rules, unfortunately, make it so that it's less likely that people are going to take advantage of these services sooner because of these rules, like, you can't be having immunotherapy. You can't, um, if you're wanting something that's only provided in the hospital, then that's generally not on hospital.
So there are rules that I don't necessarily agree with and don't fit with modern. Medicine and what people need and want for their care. I'm hoping that that changes over time. Um, But yeah, it is a as you were saying like there's all these folks so with hostess you get Um, [00:14:00] a doctor, though you can keep your own doctor as the attending physician.
If you want, you don't have to let go of every doctor, um, nurses there. The nurses are the main drivers of hospice. They visit at least once a week. They're mandated. Oftentimes it's more have a social worker. You, you see, um, a chaplain is assigned again. He might have pharmacist or. Um, volunteer or like they have a massage person like it's there's a million services that could be a part of a different hospice team.
Destiny Davis LPC CRC: Well, that's one picture where the person is still walking and living their life to the best they can. What's another that could happen?
Annie Brashem LCSW APHSW-C: Um, I think the other end of the spectrum is also okay and happens is, um, when someone is, you know, at the end of their life, maybe they were in the hospital and they have always said they wanted to die at home.
Um, Um, and they make the arrangements for someone to come home with the [00:15:00] care of hospice home being a private residence, a nursing home, nursing facility, assisted living, um, adult family home or board and care like any wherever you call home. Um, and set it up for someone to come home and have hospice checking in on them, providing medicines, providing equipment, um, providing support to family and other caregivers.
Um, Generally, hospice does not provide 24 hour care. Um, so someone would, if they're needing help, you know, going to the bathroom or eating or all of that stuff, you would still need that in addition to hospice care. Um, and then, you know, that can be provided for however long that person needs. And then after someone dies, hospice provides bereavement support for a year to family.
Destiny Davis LPC CRC: A year, that's great. That's great.
Annie Brashem LCSW APHSW-C: Yeah, [00:16:00] checking in, um, sometimes counseling, sometimes groups or kind of sending out referring to different resources depends that I think depends on the program that they offer.
The other thing that I'll say is, I, you know, they don't always provide 24 hour care, but if there is. A symptom that's not able to be controlled in that setting and needs a lot more acute medical care. There is a part of hospice that will allow 24 hour nursing, whether where you live, or in a hospice facility, but most people are not in hospice facilities.
I think that's a myth too is hospice is a place. Okay. Um, I think of it as a service provided where you live. For the vast majority though, it's not always the case.
Destiny Davis LPC CRC: That's true. Yeah. I think I have both images in my head of like, yeah, hosp a hospice team coming to someone's house. But I do also have that, that image of, okay, now you're moving them to like a hospital setting, um, [00:17:00] for that.
And that
Annie Brashem LCSW APHSW-C: sometimes happens. And I think that's also regional and health system, like what's available where I worked, uh, the. Kind of suburban exurban area that I worked in had a one six bed hospice house for the entire county. Um, and so yeah, most people were not there.
Destiny Davis LPC CRC: Yeah, yeah, that makes sense. Um, what else comes to mind that is like what people might not typically think about when they when they're thinking about palliative or hospice care.
Annie Brashem LCSW APHSW-C: Yeah. Um.
I think of sometimes we think of hospices like giving up hope, or we're giving up. So we're going on hospice and often would talk to people about like, how and then giving we're not necessarily giving up hope or our hope might be changing. We are the hope. We might be hoping for something else right previously we hope to maybe for a cure or maybe for, you know, remission or symptom management and now we're really We're hoping for [00:18:00] comfort. We're hoping for quality of life. We're hoping for some time with our family, not in a hospital setting or in a hospital setting or, you know, it's, it's really getting to know for each family and each person. What, what are we hoping for? Because that can look different. Yeah,
Destiny Davis LPC CRC: that's probably where I'm sure all sorts of different things, whether a family is spiritual and wants spiritual counseling and Yeah.
Conversations around what happens next versus yeah, no, I don't want any of that. What's next conversation? Um, Maybe I need support around what are some other things that people might need support around? Funeral homes, and like, um, navigating that, and yeah.
Annie Brashem LCSW APHSW-C: Yeah, yeah, there's definitely like a logistical piece to it, too, where we can start thinking about those things.
And in my experience, people are thinking more about the logistical things, like, Oh, I wouldn't want to be cremated, or I want to be [00:19:00] buried here at this funeral home, or whatever spiritual or religious tradition. Um. And really what, what I focus on with people is, yeah, that's a, it's very important, obviously, like what happens after someone dies, but really, I'm like, how do we want to live from now for the time that we have?
What do we, how do we want to live? Um, and there's no right or wrong answer to that. And so in palliative care, I think that's our main goal is figuring out what are our goals? What are our hopes? What are our values? What matters most? And then aligning our medical care to that. Because I think a lot of times modern medicine is wonderful and can do amazing things.
And it asks a lot of us to, um, it asks us to sacrifice time and feeling good and it asks us so much of us and our families and that's okay sometimes and maybe not what we want other times and all of that is okay.
Destiny Davis LPC CRC: Can you go a little more into that specifically like, the [00:20:00] piece around the medical system asking a lot of us, can you give examples and, and why somebody might choose to not go that route and, and what they would rather do instead with their time?
Annie Brashem LCSW APHSW-C: Yeah. Yeah. I mean, I hate, I feel like a lot of times you talk about cancer and there's so many illnesses out there that affect people. Um, that's, what's coming to mind though, cause I think it's what a lot of us are familiar with and it. But, you know, when cancer treatment can take so much out of us, right?
And so, there's often another treatment that we're offered, another immunotherapy, another chemo, another whatever it is. Um, and I think sometimes, We need to ask the question of like, okay, well, what does, what are, what am I likely to experience? What side effects? Um, how much time do I need to go in to have this [00:21:00] treatment?
Um, you know, how often am I going to be getting this treatment? Versus what am I going to get out of it? Right? So am I going to potentially get months and months of life? Um, and that's important to me or am I, okay. We don't know I'm going to spend a lot of my life, even if I have months and months feeling not well, and, um, in the doctor's office, getting tests this and that.
Um, and so someone might choose to have less time where they're feeling maybe a little better. Um, knowing that they have less time, so it's someone might choose the opposite to like, that's where we really would have these long conversations with folks about, okay, let's try to get all the information. We can, because we know a lot of doctors will give.
Quick information. Let's try to gather as much as we can. And then, um, really try to tease out what makes sense. And that's really, really, really hard. Very, very hard.
Destiny Davis LPC CRC: Yeah, because there's so many pieces and I'm sure that does take a lot of time. [00:22:00] Um, but what comes to mind is that definition of Peter Levine's definition of trauma too much too fast for the nervous system is what causes trauma.
So you just slowing down the information gathering that in itself, I think, redo can reduce some of the trauma around for the person and for the family.
Annie Brashem LCSW APHSW-C: Yeah, and also being aware of, like, different people wanting different information in different ways, so we're always checking in. Is this information that you want? And maybe you do, but your loved one doesn't or or vice versa. And we can kind of customize that. Yeah, for sure.
Destiny Davis LPC CRC: It really does give a lot of hope.
I think, um, I think of, you know, when the, when the time comes for my own, my own parents, I think, I think that's the best I would hope for is that we would have time to prepare like [00:23:00] we would, we would not time to prepare us and you're going to be prepared and you're going to be okay. You know, um, my, my dad, he lives in, uh, lives in the veterans home, blind and paralyzed from the waist down really, really immunocompromised.
And so, yeah, that's a natural fear of like, am I going to wake up one day and like, get a call and he's gone and he's in a different state and right. And so as you were talking, I was like, Wow. Just to think about, like, no, like, what if we slowly kind of, like, we knew this was coming and then there was this team that was helping us through it.
Like that, like, gave a difference in my own body of what that, because it's going to happen one day. Right. I have to be honest about that. So I can see the hope in that.
Annie Brashem LCSW APHSW-C: Yeah, yeah, just really, um, we can't predict. Right. We don't know exactly how it's going to happen. I do think that having these conversations, [00:24:00] um, it can be really powerful to sit down with a doctor or a nurse and really delve into, you know, what's going on.
What am I worried about? Because sometimes what we're worried about isn't as likely to happen, but we never had the opportunity to ask. Um, yeah. Maybe the opposite, right? And so actually the VA, I don't know, has a very, is pretty invested in palliative care. And so it can be worth like asking when, when to qualify for a consult or, um, to have that conversation.
Destiny Davis LPC CRC: No, I, yeah, I think that's a great question for me to ask. Um, and for others who are listening to this, like to just know that they might not even, you know how to bring that up to, you know, a family member until like, right where we're at the time where we have to make a decision. But what if I was the one who, like, as I'm calling to inquire about what is new with his care to ask, like, when would you guys, when would you guys start that?
Like, what, what signs are you looking for? What would [00:25:00] happen in a comfortable conversation? But That's going to be the most comfortable place to have that conversation with the doctors who are already looking after him. Yeah. So, yeah.
Annie Brashem LCSW APHSW-C: Yeah. And I, I think that would be amazing when families ask for.
Consults are curious. That's amazing. I will say that, um, I can't speak for every health system, but I think that because palliative care, even as like a specialty in medicine is new, I don't know, 10, 20 years, um, I think like 10, 15 years ago, having palliative care in hospitals was a new thing. So very, very new part of medicine.
And that means that it's not always understood even within the medical community. And so I've definitely had patients who have said, Oh, we asked about palliative care and we were told we weren't ready. You know, I, I don't know that when we're ever not ready to have a conversation about that, you know, that's all this is, is a conversation about what, you know, what's What are [00:26:00] you worried about?
What are you hoping for? Um, yeah,
Destiny Davis LPC CRC: I could see that conversation. Like, hey, we heard about palliative care. Can you tell us more about this? And they're like, no, no, no, you're not at that point yet. Because they don't know a whole lot about it. Whereas instead of the person you might ask, you're like, cool. I'm so glad to hear that.
Thank you. And what would let you know that we are getting close to that point? What? Yep. Yep. Are there other questions you can think of that somebody might have to spearhead that conversation with if, you know,
Annie Brashem LCSW APHSW-C: Um,
that's a good question. Um, I think it's just, yeah, having, I don't know the specific language, but it's just like having the, the knowledge and, and trying it out and then self advocating. Self advocating, which we all know is a huge part of having a chronic or serious illness. Um, and kind of, like, getting a 2nd opinions of 1 doctor is like, you're not ready.
It's like, okay, well, maybe I'll ask another doctor. Um, I don't know that we're ever not ready. It just might be that. The [00:27:00] program in your area is. Not the right fit, which is unfortunate. Um. And I would say the other thing is that a lot of times people are waiting for their doctor to bring these things up.
Um, I hear from people. Oh, well, the doctor will tell us when it's time for hospice. The doctor will tell us when it's time for this. And I think that's a being deferential to our doctors is a can be a good thing. And also, um, I would always say again with hospice, you know, there's 2 criteria that you have to meet and it there's only 2 criteria and we can't always know when that 2nd criteria is going to be met of wanting comfort focused care that happens. And so, um, if we're feeling ready for that or wanting. You said that
Destiny Davis LPC CRC: happens some, what, that happens, what, sorry.
Annie Brashem LCSW APHSW-C: So, yeah, so the two criteria for hospice are having approximately six month life expectancy and wanting comfort focus medical care wherever you live and [00:28:00] wanting that comfort focus medical care can happen at different stages of illness for different people.
Um, and so the doctor may. have a different idea of when we should quote unquote pursue comfort focused care than the family.
Destiny Davis LPC CRC: That makes sense. Yeah. So I, especially if, like you said, it's still kind of relatively new. And so maybe even doctors are like, yeah, you're not like on, On your deathbed yet, like very extreme and you're saying it can happen sooner than that and should happen sooner than that.
If the, if that's what the family wants. And then that's where, of course, counseling comes in to understand how are you making this decision? Is this what you want here are to think about. And then we can, we can make this decision together from a
Annie Brashem LCSW APHSW-C: yeah, yeah, exactly. And that idea can shift over the course of an illness too.
You know, what we say today makes sense for us. What our goals are for our care [00:29:00] is one thing and in two weeks or two months or two years, it can be something else. And I think that's hard sometimes in the medical system for other. Providers to understand is that, like, our goals of care and our values and our hopes change and that's okay.
Um, also, okay. If the medical system is wanting. Wanting something for you, wanting a type of care for you, and that's not what makes sense. So the medical system doesn't define quality of life. We, as the patients and families just decide quality of life. And that might look different to a family. They may say that.
As long as they can open their eyes and smile at us, that's quality of life and that's great.
Destiny Davis LPC CRC: That makes sense. What does, is it typically hard to advocate for yourself in this system?
Annie Brashem LCSW APHSW-C: As a patient? Yeah.
I think so. I think it's harder than it needs to be or should be. Um, [00:30:00] but I don't know that that's anyone's fault. I think that's like the way that our system is set up. Um, people don't have a lot of time. It costs a lot of money. Health systems have Um, incentives and so I don't think it's like any particular doctor or health systems fault.
It's the entire system. But yes, I do think that it can be. Up to us and hard to do
Destiny Davis LPC CRC: if you could for doctors and policy makers into a room and talk to. What would you what point would you want to convey most to them?
Annie Brashem LCSW APHSW-C: I'll probably come up with a better answer than this in, like, 2 hours, but, um, what first comes to mind is what we call, uh, concurrent care and in hospice.
And so they actually are allow that for pediatrics, which I'm not an expert in pediatrics, but, um, my understanding is that. Hospice care can be provided alongside more like [00:31:00] curative or disease directed treatment, um, for kids often. So basically
Destiny Davis LPC CRC: alleviating a ton of pain while also going through life saving treatments?
Is that what that means?
Annie Brashem LCSW APHSW-C: Yeah, and the added layer of support of this interdisciplinary team coming in, um, again, I'm, I'm not the expert on that, but that's my understanding. And so that's what I would want for everyone with a serious illness is that, like, the day, I mean, you qualify for palliative care, supposedly the day you get diagnosed with a serious or life limiting illness.
Again, we might not be able to access services based on limited services, but we should. Um, and so. We should be providing palliative care and or hospice care, this robust added layer of support of nurses, social workers, doctors, having time to spend with you figuring out your goals, what's important to you, what matters most, [00:32:00] alongside whatever treatment you're getting, whether you have to have a surgery or chemotherapy or, um, whatever else is being recommended for your illness.
So there you have it. I hope one day you can have both. You can have this robust team of people visiting you at home, providing all this care, and the quote unquote regular medical care at the same time. I think outcomes would be satisfaction and like longevity outcomes of mine. I would imagine would be improved, but I don't have any data for that.
That
Destiny Davis LPC CRC: sounds pretty ideal for sure. So the work you do, are you in private practice or are you in a setting right now?
Annie Brashem LCSW APHSW-C: Um, so I have a private practice. Um, I work with people with serious illness and caregivers, not necessarily even serious illness, more just illness, um, and like loved ones of people with [00:33:00] illness.
Um, and so you're not necessarily
Destiny Davis LPC CRC: doing like palliative, the, the therapy in within palliative care, but some of your clients may be, and then others, But you have this background in, like, how do we increase your quality of life in the worst of circumstances? So when you are working with someone with a less severe illness, you're, you have this vast background of, again, how do we just improve your quality of life?
Annie Brashem LCSW APHSW-C: Yeah, how do we improve your quality of life and also just understanding the medical system? So, like, the barriers that people, um, come up against, um, questions to ask their doctors. I just, because I worked in the health system for so long, I feel like I have an understanding of that, just no matter what type of illness it is.
And I think a lot of people, any type of illness, are thinking about these things. You know, what happens if my cancer comes back? What happens if my illness gets worse? What happens if I get a new [00:34:00] illness? What happens if something unexpected happens? I think we're all often thinking about that. Um, and we can have those conversations now just because on paper your illness might not have a limited prognosis.
That doesn't mean we aren't thinking about our mortality or thinking about death or what would happen. Also, the medical trauma that people are experiencing, um, regardless of the quote unquote, severity of the illness that doesn't. We know that severity doesn't doesn't equal trauma level, I guess.
Destiny Davis LPC CRC: Yeah, I think what makes what point comes up for me is like, um, so for a lot of.
Folks with syndrome, like, um, mind, body, like people who are really, um, fibromyalgia and sometimes people are, I'm hearing people loop Ehlers Danlos syndrome into that. Like this, [00:35:00] like mind body connection, which I, that's my main, what I work with, they get labeled as, you know, if you're thinking about your pain getting worse.
And like, again, there's our labs are showing we're doing great. Like everything, you know, there's even like nothing on paper is wrong with you when you have fibromyalgia or like, whatever. So you're problem. And it's like, actually like, Is it not the most human thing in the world to worry if something is going to get worse if there's no, like, support or checks in place, or even if there are, like, if I'm scared of what the worst thing can be, my brain is going to bring me into a place where I'm worrying.
There's nothing pathological about that.
Annie Brashem LCSW APHSW-C: No. That sounds normal to me. Yeah. That sounds expected. Yeah, and I think that's a huge point and so important no matter what type of illness it is, is that it doesn't. Yes, lab values matter and like your scans. I don't know that all matters. Sure. But like, how do you feel day to [00:36:00] day?
So that's actually what we would say in palliative care is like, okay, the lab values say one thing, but what is a good day for you? And how can we maximize those good days? Um, regardless of what the lab so your whatever lab might be super off, but you're not feeling that bad or vice versa. And so what's important is how you're doing.
Okay. Um, and is that quality of life to you or not? And how can we make up the gap? Um, my husband has, has chronic illness. He has heart failure. Um, and he gets very, very fatigued. And so that's part of heart failure. And his, we're always like, is there something you could do? And they're always like, your labs look actually really good.
We're really impressed by your labs. And we're like, that doesn't matter. He's getting fatigued. Like, what can we do? So, um, And so it's like, yeah, it doesn't necessarily matter. It's what is your day to day? How are you getting through the day? How can we improve that? Sometimes we can't, sometimes we can't.
Destiny Davis LPC CRC: [00:37:00] Yeah. Yeah, that's right. Sometimes we can, sometimes we can't, no matter what the illness is. Um, yeah, just going back to that fear piece. It's just so human, scared. Of course, you're going to feel angry. Of course, you're going to feel like. This drive to fix this drive to what can we do right? That's so human.
So just allowing for that experience, which sounds like you and your family do. Um, are there other kind of coping mechanisms in that way that either you personally use or that you help clients use that? You can think of, I know it's hard to think of them without the context, but yeah, um,
Annie Brashem LCSW APHSW-C: yeah, it is hard out of context, but, um, a lot of self compassion, a lot of, um, really allowing ourselves to feel whatever's coming up, um, trying to reduce self judgment. Um, [00:38:00] I think a lot of the, the standard therapy things kind of. Come into play. Um, I think it's something that my patients often are dealing with is like we're living our life and life is stressful.
All these things are coming up and then you add illness on top of that. And so it's like, we're always we're always running at like a 9 out of 10. so it's only it's just like 1 little thing that pushes us over the edge. Um, and so. How do we, how do we try to live not at a 9 maybe so that when these exacerbations or when these things come up, we're not necessarily being pushed over the edge, which isn't always as possible in our society.
That doesn't have a lot of supports in place
Destiny Davis LPC CRC: for folks, which is kind of what we're talking about with the other palliative care piece. Like, it would be nice if we could work on treatments and also get a ton of extra support. That's coming to our [00:39:00] house, you know, that's invaluable to know that I don't have to make this appointment every month.
People are coming and even that, even the logistic support is emotional support too. Especially when someone else has taken that mental load over. So if you've got a palliative care team, they've taken on the mental load. I would assume. Um, for the most part.
Annie Brashem LCSW APHSW-C: Some of it. Yeah. I think a lot of times people are needing and wanting it like a case manager, which is not generally, I think what's provided by palliative care, but, um, I don't, yeah, I mean, even our program used to be like, we used to tell people, here's the phone number, you can call, and you'll get in to the people in our program here into the phone.
So you're, I was like, if you have to leave a message, they'll call you back, you know, they'll get us the message. Instead of, like, you're not being sent into the abyss of like, I left a message and no one's going to call me [00:40:00] back. I don't know if it's like that everywhere, it's where I live, but, um, You know, it's like, that is emotional support.
Just knowing that I'm going to be able to call in with my question, leave a message and get a call back quickly, probably with an answer or like I'm working on the answer, like that's huge. And that's not how it works.
Destiny Davis LPC CRC: Yes, that's exactly right. So there's a ton of logistical support. There's a lot of emotional support in a few different ways.
Um, it is, it can't on the same token, be hard to advocate for yourself. And so that, you know, that might be a thing that, that happens, that that's a struggle. Um, what else have we not talked about or touched on in this, in this world that, that really could be addressed here?
Annie Brashem LCSW APHSW-C: So, a couple things that are coming to mind, and you can tell me what might be most interesting, is Um, [00:41:00] paperwork comes up for people, like advanced directives, um, when we're facing illness and also it's called different things throughout the country, but like a post form, um, like a CPR, DNR form, people might know about it that comes up.
And then also, um, we are talking about, like, um, kind of relates, like, medical aid and dying, um, which is popping up around the country and different states. Not every state isn't legal. That's right.
Destiny Davis LPC CRC: Definitely. Yeah, maybe we can touch briefly on the first two and then very much go into what you know about suicide assisted care.
If that's even the right name for it, you let me know. But that is actually something I'm very curious about.
Annie Brashem LCSW APHSW-C: Okay, um, so sometimes when illness is coming up or just aging, um, in general, we're recommended to, I mean, anybody should, is supposed to have an advanced [00:42:00] directive, which is a legal form, um, that would identify someone to help make decisions for you, medical decisions or financial decisions, if you're unable to.
Um, I think that that can be very state specific how all of that works, um, so I don't want to go into details because I only know California, but, um, I would say those are important depending on your state, depending on if you're married, depending on kind of if you're worried about family friction in making decisions.
I don't know that I'd put like, That you have that that's the number one thing you should do, but the one resource I would recommend is called prepare for your care. So, website where I checked actually, all 50 states and Washington, D. C. have a version that are legal in the state and it really does a good job of.
Calling out in a way that anybody can understand different medical decisions that might have to be made and allowing you to think that [00:43:00] through is most important. I think to have that conversation with your loved ones. More than even writing it down. Um, but I think prepare for your care is like the best option.
A lot of them are very legalese that I'm like, I don't even know what that means. Um, so that's an advanced directive then the other form that comes about usually when people are. More seriously, I'll have pretty limited life expectancy is. California, we call it a post. P. O. L. S. T. Physicians order position order for life sustaining treatment can be like a most or I don't know.
There's a million things in the States, but basically, it asks about if you have, um, preferences for very specific medical situations, um, it's signed by you or your health care surrogate or agent and the doctor. And it. Is it's a medical order that has to be followed. Um, whether paramedics [00:44:00] come to your house or you're in the hospital, if they see that, then they follow those orders.
Um, and we can go into CPR and DNR and all of that. Um, I would say if you're interested, you can talk to your healthcare professional. But the one myth I have is that DNR is, um, I think we think of it a lot as like no treatment. Um, and a DNR do not attempt resuscitation is really only in a very specific circumstance.
Um, and, uh, yeah, there's a lot of myths about all of that, but I don't know. Yeah, yeah, yeah.
Destiny Davis LPC CRC: I can say maybe just another, like, another paragraph on that. It doesn't mean you get no treatment. If someone is Yeah. The road and they have a bracelet on that says DNR. Okay, what do that?
Annie Brashem LCSW APHSW-C: Yeah. So get in a car accident or you have a heart attack or something big.
Big happens, right? Something unexpected. A DNR do not attempt resuscitation or. It comes [00:45:00] into play only if you're not breathing and have no heartbeat. So if you have died, that's the definition of death, you're not breathing and you have, and your heart's not beating. Do we want paramedics or other medical professionals to attempt to bring you back?
It's not a guarantee, but do we want them to attempt to bring you back? And that often would include, if successful, chest compressions, shocks to the heart, tube down your throat to help you breathe, and time in the ICU recovering. And it can be a very long and difficult recovery and often people don't come back to where they were before the event if they do survive.
On TV, we see like shock. Oh, they're alive. And we wish we had that intervention available. We don't, um, so it's only in that circumstance. So if we have a DNR order, we can still receive, we can solve surgery. We can still have chemotherapy. We can still have, um, support helping us breathe. It's only in that [00:46:00] one circumstance.
Destiny Davis LPC CRC: And can you say maybe just a little bit more about what might make someone, I'll give you, make that decision and I'll give you an example of why I'm asking. Um, my dad was resuscitated. He died several times that, um, he couldn't talk for a year and a half after and then he had three to five second short term memory loss couldn't remember what.
What you said, my dad is now like pretty, I say fully functioning, but he's, he is blind. He's paralyzed from the waist down. Um, but we talk on the phone often and and use Siri on his phone since he can't see. Um, and you know, we can text and sometimes I forget like that. This isn't like normal really with your dad, but if he, I, he did tell me at one point years ago that if something [00:47:00] were to ever happen, like, don't bring him back again, I would imagine I actually probably should just talk to him more about this, but I would imagine that's like.
The quality of life that he's already at, it would be so much worse coming back. So it's not like I, it's not that he would choose not to do this again. I really don't believe that that's true. I think he would want his grandkids and then with that, you know, but at this point, then that that's how I think he would make that decision.
So yeah. Yeah. Is that kind of, am I on the right track with how someone might? Yeah. Yeah. I
Annie Brashem LCSW APHSW-C: think people, everybody's different. So I, that makes total sense. Um, and I'm glad that he's. Recovered to this place that he has sounds like a difficult journey that is doing well now. Um, but yeah, I think some people have very strong feelings, like, especially some older adults will be like, no.
And you're like, okay, they're like, when my time comes, my time comes. Okay, great. And other people, it is this [00:48:00] more nuanced conversation and maybe we don't make the decision. Maybe we do decide we're going to attempt resuscitation and see what happens, knowing that. Usually the forms have an option where like, like a trial period kind of we'll see how we go.
Um, I think it's really just engaging in these conversations with them, especially this one with a medical professional in your specific medical situation. What it might look like. Um, But yeah, like what you're saying with your dad, maybe he started very high functioning, and then now he's at this level, and if he went through that ordeal again, he would be at a lower level that he wouldn't deem acceptable quality of life.
And that's okay. I mean, my husband was also resuscitated, um, and, you know, he was a young firefighter, healthy firefighter, and now, you know, he has heart failure, and we wouldn't not do that again. It's modern medicine saved his life. And, um, It took its toll.
Destiny Davis LPC CRC: Yeah. [00:49:00] Thanks for sharing that. Anything else about that before we go into, okay, yeah, so please tell me about what is kind of the new and what is what is important in this conversation about helping somebody die peacefully.
Annie Brashem LCSW APHSW-C: Yeah, so I think the term, at least where I am, uh, that people are using is medical aid in dying. Okay. Made, M A I D. Um, we try to avoid suicide, um, in part of the title because it's seen as very different. Huh?
Destiny Davis LPC CRC: Stigmatizing and
Annie Brashem LCSW APHSW-C: Yeah, stigmatizing and different. Um, so, I don't know how many states have medical aid in dying laws.
I want to say it's like 15 or 20. I didn't look it up. It started in Oregon, in California, er, years ago. Decades ago, and in California started in 2016. Um, and there have been just more and more states [00:50:00] adopting laws that are all kind of similar to the Oregon law. Um, I can speak to. There's 10. Yeah. Oh, not as many as I thought.
Um,
Destiny Davis LPC CRC: this says as of 2023. Okay. That's probably about it does say, however, the need for dignified legal end of life option reaches far beyond the borders of those 10 states. So, yes.
Annie Brashem LCSW APHSW-C: Yeah, so there's 10 states that have a law allowing. Aid and dying. I can speak to what the law says in California, , and I think other states are probably fairly similar, but I cannot be held to California.
I don't even know if I am the expert on that. You're not a lawyer, that's the I'm not a lawyer. I'm lawyer. Um, so what I know in California is that it's pretty actually simple. The criteria. One is you have to be 18. Two, you have to be a resident of the state. Three, you have to have a [00:51:00] limited, uh, uh, terminal illness with, uh, two doctors that state that your expected life expectancy, expected life expectancy would be six months or less, so similar to hospice, and four, you have, um, the capacity, the mental capacity to make this decision.
Um, yeah. So, those are the criteria. If you meet those criteria and you can find a doctor that, you need two doctors. One is the attending physician. One is the consulting physician. The consulting physician basically just says, yes, this person has a terminal illness. The attending physician does a little bit more of generally an interview, making sure you are kind of understanding why you want to do this.
That you are mentally, um, competent to make this decision, um, and then they prescribe medicines that you can take to, um, [00:52:00] End your life. There's a lot of,
Destiny Davis LPC CRC: yeah, they give those medicines to you and basically send you home. Um, but I would assume there's a plan to where you're going to die and all of that.
Yeah, there's a lot of
Annie Brashem LCSW APHSW-C: intricacies that, um, probably are state specific and like situation specific and doctor specific, but generally, um, you're prescribed the medicines. There's a couple of different ways that can go. But you have one of part of it is that you have to be able to, to take it yourself. So whether that's swallowing the liquid or pressing a plunger, it has to be self administered in whatever way.
Destiny Davis LPC CRC: Pen type thing.
Annie Brashem LCSW APHSW-C: Um, so this is I don't I don't know if I want to. My understanding is that it would like you could. Push it through like a feeding tube, or sometimes there's like a rectal administration route too, [00:53:00] um, I'm making this motion, I can't be on a podcast, but it's like a, like a push of your thumb.
But again, I think there's lots of ways that this can happen that are beyond my medical knowledge of like, how to make it accessible and that's been, um, there's been a lot of work. From different advocacy groups about how different illnesses affect the ability to self administer and how can we make it more accessible.
Destiny Davis LPC CRC: Yeah. To you, like, if you're quadriplegic, then you don't have, like, right. Right. Also have a terminal illness. Like, what do you do? Right? Exactly. And so I. Yeah, yeah, it's kind of like, beyond beyond our scope of today's. Yeah. Yeah. But these are questions that I think, I don't know. Yeah, I'm just sharing my curiosities and.
Because most people don't talk about this stuff. Saying like, yeah, this is a really hard topic. And this is a real, um, people go through. Maybe you just don't even know what [00:54:00] questions to ask or where to start. And our conversation today is obviously very, very like scratch the surface. It can spark that, um, feeling secure enough to begin the conversations.
Annie Brashem LCSW APHSW-C: Yeah. Yeah. I think, um, that there's. So built into the law, at least in California is the opportunity for any medical provider to opt out. So, um, you don't have to participate even if you're like, you as a doctor, you don't have to prescribe or be a consulting physician. You don't, you don't have to even engage in the conversation, even if you're like, an interpreter at the hospital, you can say, I don't want to participate in this conversation.
So that's built in because it is challenging for folks. Um, but I would say. Uh, you know, if folks are interested in having a conversation, there are lots of people, providers out there, there's a whole doula network, end of life doula network, there's, there's definitely information, [00:55:00] um, and folks who will talk to you.
Um, the other myth that I know, or not myth, but like question people have is what it says on the death certificate, at least in California, I would say it doesn't, it does not say suicide, it'll say whatever illness you have.
Destiny Davis LPC CRC: Oh, okay.
Annie Brashem LCSW APHSW-C: So like,
Destiny Davis LPC CRC: yeah, I wouldn't even That's a huge piece. Cancer.
Annie Brashem LCSW APHSW-C: Yeah. Mm-Hmm. , uh,
Destiny Davis LPC CRC: yes.
So it would say cancer,
Annie Brashem LCSW APHSW-C: yeah. Mm-Hmm. or, um, whatever other illness you might have.
Destiny Davis LPC CRC: Yeah. Yeah. Right. Shouldn't it just be that even if you, you know, died by gun, died by suffocation, died by, I feel like that's just what it should say on the death certific. Yeah. Yeah. Because if you are, if you were murdered, it doesn't say murder, right?
It doesn't say, yeah, gunshot wound, yeah. I think. I don't know. Yeah, I would say like gunshot wound. So maybe I have to, yeah, we'll look into that. But yeah, why do we have to say suicide? We wouldn't say murder. We would say gunshot wound. So [00:56:00]
Annie Brashem LCSW APHSW-C: yeah. Yep. Same. Yeah. I never thought about that way, but yeah. So it's not, um, it's not considered a.
Suicide, it's you're, you know, dying from your illness, you're take, you're just, uh, choosing a little bit more when that happens. There's also difference in the states of like, sometimes you have, I think you have to ask twice and there's different, um, you ask today and then a certain number of days later.
There's lots of, they tried to put a lot of fail safes in the law to really, um, make sure people are sure. Um, and I have seen this kind of play out for a lot of different patients and. Um, you know, some people make the ask and they don't take the medicines. Um, they just like knowing that it's available.
Like, there's a lot of different ways that this goes. That makes sense. Plays out. Yeah.
Destiny Davis LPC CRC: This is a really difficult conversation. I just, yeah, want to appreciate you [00:57:00] participating in it and And starting that conversation, if people have more questions, um, I think you mentioned a website. Well, no, this wasn't about that.
This yeah, but prepare for your care is definitely I'll link that in the show notes because yeah, that's a really great resource for advanced directives and. Um, things like that. But yeah, do you know of any resources around just learning about medical aid and dying? I know Death with Dignity is a website that I've come across before and I see it.
Annie Brashem LCSW APHSW-C: Um, I can look up a good one. I mean, I kind of know where you would go in California. Oh, I think compassion and choices. Probably I can send you this link because it's like listing all the states and stuff. Yeah. And just
Destiny Davis LPC CRC: so people know, you know, this conversation is it's not something you just. It's not to be taken lightly, and that's why there are all these [00:58:00] fail safes in place, and why it does have to be a terminal illness, and obviously, we advocate for, um, as mental health professionals, like, our job is to, half the time, is helping people not, um, Not take their own life.
And that's not because there's a more, a more, it's not about morality. It's just, we also have seen so many people go through dark places and be, we also know too, that when people attempt suicide and they don't, they don't succeed that they often are glad that they didn't. That's what our research. So this isn't the first choice by any means.
It's not the first choice for anyone. But. You are in a low place and you happen to be listening to this right now. Just know, um, yeah, reach out for support first and foremost, and keep reaching out for support, incredibly important. And of course there is the, now we have the national, um, the national hotline.[00:59:00]
9 8 8. I think you can text it too. If you are. If there's even a doubt in your mind that you don't want to go through with it, then that's the, you use that moment to call this number or to, and, and honestly, there's kind of something in, cause I, I've worked with people too, where they're in such a low place.
They reach out to friends and family, friends and family don't know how to help. And that actually makes you feel despair. So sometimes these numbers, even though it might seem like cold and detached, like a nine, a 98 number, it's just detached enough that. It might be the thing that makes you reach out.
Yep. Yeah.
Annie Brashem LCSW APHSW-C: No, I appreciate you bringing that up. Um, yeah, I talk about this a lot, so it doesn't, I, I, it feels normal to me and I guess, you know, we, um, [01:00:00] I see them as two different buckets. And, um, but they're all worth reaching out for support. Um, Reaching out for support. We live in a death denying society.
And I think that talking about it is the antidote to that. And so there's lots and lots out there on either side of this equation.
Destiny Davis LPC CRC: I agree. Thank you for having this conversation. Um, and I'm looking forward to publishing this. Yeah.
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Listen to Annie’s interview with me, Destiny, on Episode 70 of The Chronic Illness Therapist Podcast.
Meet Annie - A licensed mental health therapist in private practice in California specializing in grief, chronic illness, terminal illness, and adults caring for their aging parents. See Annie’s website here.
Meet Destiny - The host of The Chronic Illness Therapist Podcast and a licensed mental health therapist in the states of Georgia and Florida. Destiny offers traditional 50-minute therapy sessions as well as therapy intensives and monthly online workshops for the chronic illness community.
Destiny Davis, LPC CRC, is solely responsible for the content of this document. The views expressed herein may or may not necessarily reflect the opinions of Annie Brashem, LCSW.