Questions Death Doulas Ask
Lori was delighted to be asked by the folks at Mindful Magazine to write an article based on her TikTok series, Questions Death Doulas Ask. You can find the original article here: https://www.mindful.org/6-mindful-questions-to-ask-yourself-about-death-and-dying/
Facing the reality of death—whether our own or a loved one’s—can be deeply painful. Yet, many find more ease once they accept that death is a part of life. These prompts can help us ease in, lessen anxiety, and maybe even feel a little more prepared.
“What the heck is a death doula!?” It’s a question I’ve gotten in bars, Ubers, public parks, and via telehealth platforms—essentially, whenever I tell people what I do. And I admit—it’s a question I love answering, because death doulas address a universal need. Every person eventually faces the fact of death and dying, whether we lose a loved one, are faced with a terminal diagnosis, or feel anxious about end-of-life. This is where death doulas can help.
What is a Death Doula?
A death doula is a non-medical support person who serves a dying individual, their loved ones, and/or their caregivers. Prior to medicalization and the emergence of professionalized death care, most people died at home where members of their community or family would tend to them and serve as a peaceful presence. Many people today state they want to be at home, but instead die in hospital beds, their caregivers unequipped to meet their needs or feeling incapable, intimidated, or overwhelmed. Death doulas can be part of the team that makes dignified home deaths possible. (Though we work anywhere we are welcome!)
We answer questions, ease anxieties, serve as guides, and advocate for autonomy and dignity. And death doulas aren’t only for the imminently dying. We assist people in all stages of life with advance care planning, resolving death anxiety, supporting grief, education and social justice activism, and other related issues. Death doulas tend to be a flexible, curious, and present bunch—if there’s a need, we’re going to try to anticipate it, and if we’re not the ones to fill it, we’ll find the right person for the job. Whether you’re caring for sick elders, wrapping your head around your own end, or grappling with a chronic or life-limiting illness and its ramifications, there’s a good chance that a death doula’s services could be of use to you.
6 Questions a Death Doula May Ask
In a society where we often struggle with facing end of life issues head on, death doulas ask questions that others might not think or know to ask…
What sounds would you like to hear during your dying process? Would you like it to be quiet, or would you like ambient sound? Perhaps you like rock music. Would you like conversation to happen around you, or would you prefer peaceful contemplation?
What is a memory that brings you strength, or showed you your own strength? When in your life did you feel most strong and capable?
If you died today, what would you want your epitaph to be? If you don’t want an epitaph, perhaps consider what sort of ‘closing statement’ you would like about your life and legacy.
Is there something you’ve always wondered or wanted to ask, but didn’t? Would you like to ask it now? Why or why not? What’s complicated about the asking?
How do you want to be remembered after you die? If you feel inclined, choose three adjectives that you hope those who know you will use to describe your memory.
What is the best advice you’ve ever received? How did you put it into action (or didn’t you) in your life?
Engage with these questions as you feel comfortable. You can journal, simply sit in contemplation, or perhaps use these questions to spark conversations with friends and family. Just be sure to check-in along the way and show yourself kindness as you reflect.
The challenges and rewards of self-care
First and foremost, let us say that we at PDDC firmly believe that we cannot care for ourselves alone. We cannot self-care ourselves into wellness. It is our belief that the integration of self-care with community care is best for all. PDDC seeks to practice community care whenever possible and to model this in our interactions. That said, here is a blog about self-care and how to do it to the best of our abilities. Read it with the knowledge that we believe SELF-CARE ALONE IS INSUFFICIENT. And not because you aren’t strong or good enough, but because humans do not work that way. You do not have to go it alone. You are not alone. And with that said… here we go.
What is self-care?
The term “self-care” is a buzzword in certain circles, but what does it actually mean and how does one start doing it? Authors Lee and Miller defined self-care as, “a process of purposeful engagement in practices that promote holistic health and well-being of the self.” If that seems a little vague, it’s in part because self-care is as varied and unique as we are! Each person (“self”) determines what practices best promote their well-being. Self-care is that which we purposefully do to attend to our whole selves’ wellness — mind, body, and soul. Self-care is a practice or process that occurs over time and must be repeated for full benefit, not a one-time event.
Some among us might be able to rattle off a long list of practices and experiences they consider to be effective self-care; others might struggle to identify one or two. We might also find, in times of high stress or challenge, that our previous self-care strategies are no longer feasible, powerful enough, nor as helpful as they used to be. New situations sometimes require developing new approaches.
Some of the best self-care practices are comprised of simple actions that integrate smoothly into your lifestyle. Self-care is not inherently expensive or time consuming. (But they certainly could be, if that’s your thing!)
Why does it matter?
Cancer is primarily out of our control. Its demands — treatment, side effects, surgeries, etc. — can bring feelings of helplessness or frustration. There are, however, some things we can do to regain a sense of control. We can’t change cancer, but we can make decisions about how we care for ourselves and our loved ones. Self-care is one way to “get back in the driver’s seat.” Through self-care we pay attention to our needs, strengthen our reserves, and perhaps even build resilience. Learning to lovingly care for ourselves is not the same thing as being self-indulgent. Self-care during cancer treatment, whether for caregivers or patients, is an essential and vital part of happiness and health.
Research shows that regular self-care practices can reduce the adverse effects of stress, sleep disturbances, and anxiety. It has been shown to prevent overload and help build focus. It’s a personalized, oftentimes free thing we can do to help ourselves and be proactive about wellness.
Simple self-care techniques to consider
· Slow down and find quiet time for rest and pause. “Slowing down” doesn’t mean just physically; our minds can still be moving very fast when our bodies are unmoving. Practice mental stillness. Try to focus on one day or one moment at a time.
· Do an activity you’ve always loved (or discover a new one). Knitting, reading, taking a bath, going for a walk, baking — make time for the things that make you feel accomplished, at peace, or fulfilled. Share your priorities with friends and family so they can help you schedule in meaningful activities.
· Try starting a journal. Even if you’ve never been a writer, finding a space to record thoughts, worries, and experiences can be liberating.
· Practice positivity and gratitude. No one is naturally grateful or positive all of the time, but keep your eyes open for good things, no matter how small. You could combine this with journaling, by writing down gratitudes each day.
· Listen to a podcast. Start with a topic that interests you, anything from crime stories to vintage cars to TEDTalks, and then search in iTunes, Spotify, or similar. Live Better With puts out a Cancer Companion podcast most Thursdays. Feed your brain, too.
· Eat nourishing foods.
· Do some light exercise. Exercise can seem daunting, but it’s an important part of recovery and healing. Small movements can have big impacts. Yoga is a great place to start. Note: before embarking on a new fitness regimen, reach out to your medical provider for clearance.
· Spend time with loved ones. If all you have energy for is a cup of tea with a treasured friend, so be it. Connect with loving people. You do not have to go through your experiences alone.
· Prioritize sleep. Sleep is incredibly important for our bodies and minds. Explore aromatherapy, sleep podcasts, ASMR recordings, or coloring before bed to calm your mind.
· Try mindfulness. This can be as simple or as complex as you feel ready for, including just a reminder to self to breathe deeply. You could also try an app.
· Challenge yourself to ask for help. It’s normal to feel uncomfortable, but asking for help is not an admission of failure. It’s brave to acknowledge our limitations. Asking for help from those you trust can ease your burden.
· Prioritize your tasks and time. This could mean saying no, which is easier said than done. Are you feeling overwhelmed or introverted? Say no. It’s OK.
· Be kind to yourself. There is no one “right” way to go through the experience of cancer. Mistakes and stumbles are part of the process of finding out what does work for you.
Want more?
Here are some extended readings on this topic.
· Five Things that Self-Care Isn’t
· 8 Self-Care Tips for Cancer Survivors
· Self-Care Tips for Cancer Caregivers
· Cancer Taught Me That Self-Care Isn’t Selfish, It’s Essential
· Methods of Self-Care to Deal with Stress and Anxiety
· Self Care (For the Real Life Cancer Patient)
We would love to hear from you! What self-care practices do you utilize? What techniques would you like to integrate into your practice?
Originally published at Caring Connection: An Online Community for Patients & Families Facing Cancer, a private blog community for patients at Joan Karnell Supportive Care Center, Abramson Cancer Center at Pennsylvania Hospital in Philadelphia.
Questions about hospice care, answered
Defining hospice care
Hospice care provides humane and compassionate care for people in the final phases of incurable disease so that they may live as fully and comfortably as possible. The hospice philosophy accepts death as the final stage of life. Hospice care treats the whole person, working to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered — it includes the patient and the family in making decisions. Sometimes a doctor, patient, or family member might worry that hospice means “giving up.” This is not true. The hope of hospice is making the best of each day during advanced illness.
There can sometimes be confusion surrounding the difference between “hospice” and “palliative care.” The terms are not synonymous. All hospice care is palliative care, but not all palliative care is hospice.
Palliative care is an umbrella term; it provides an extra layer of support and care for patients diagnosed with a serious illness at any stage of that illness. Palliative care patients can continue to pursue curative treatment; in fact, palliative care is often used to alleviate physical, emotional, and spiritual side effects from those treatments.
People who have been diagnosed with six months or less to live become eligible for hospice. It is still focused on pain and symptom relief, and adds the aide of chaplains, volunteers, and bereavement specialists in addition to nurses, doctors, and social workers. The over-arching goal is comfort. Hospice may occur in the home, assisted living facilities, nursing homes, or at an in-patient hospice.
What does hospice care provide?
· Pain and symptom control
· Home care and inpatient care
· Spiritual care
· Family meetings
· Coordination of care
· Respite care
· Bereavement care
· Guidance through the dying process
The blessings of hospice
It may be helpful to hear from those who have experience hospice care themselves, either as a family member, part of the care team, or firsthand. There are many accounts available online, but here are a few:
“The hospice gives a person the opportunity to die with dignity. It provides care, help, and as much comfort as possible… When the patient enters the hospice, an entire team sets to work to meet the family’s needs — a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator, and of course, the volunteers.”
–Art Buchwald, A Humorist Illuminates the Blessings of Hospice
“The Hospice people come to me, and they are kind and caring. I don’t have to put on a strong face with them. I can talk honestly about life, death, pain, and pain management. It is not the same with people in the ‘normal world’ who are uncomfortable with such topics and sad to see us struggling to talk and walk. The caregivers come in droves… A truly wonderful lady, Regina Gerald, comes twice a week to scrub my hair and body. I am not used to such attention, and have never been so clean!”
–Connie Lawn, My Journey With Hospice Care
“The entire team — all are excellent. They really care for people. The nurse, Eileen, takes my blood pressure, checks my whole body, arranges my medicines, gives me the supplies I need, calls the doctor if there’s a problem. Sometimes I feel very depressed, but she and Henry make me feel better… I had been in and out of the hospital, and they finally told me not to come back. But when I got with this agency, I didn’t have to go to the hospital no more.”
–Mercedes Perazzo, In Hospice, Care and Comfort as Life Wanes
“In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.”
–Dr. BJ Miller, How to Prepare for a Good Death
Originally published at Caring Connection: An Online Community for Patients & Families Facing Cancer, a private blog community for patients at Joan Karnell Supportive Care Center, Abramson Cancer Center at Pennsylvania Hospital in Philadelphia.
National Healthcare Decisions Day
It all begins with an idea.
National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative of The Conversation Project, and is designed to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.
82% of people say it’s important to put their wishes into writing.
But only 23% have actually done it.
80% of people say that if seriously ill, they would want to talk to their doctor about wishes for medical treatment toward the end of their life.
But only 7% report having had this conversation with their doctor.
If you were unable to speak for yourself, what would be most important for your friends, family, and physicians to know?
The key goal of NHDD is to change these statistics by demystifying healthcare decision-making and making the topic of advance care planning unavoidable. Advance care planning is more than a living will, but starts with conversations and should involve choosing a healthcare agent. Furthermore, advance care planning is for everyone, at any (or no) disease stage. NHDD encourages all of us to have conversations before crisis and to begin to see advance care planning as a gift we can give to our loved ones and future selves.
What’s a healthcare agent?
A healthcare agent is a person you choose in advance to make healthcare decisions for you in the event that you become unable to do so. Here’s a quick (and amusing) video about choosing the best healthcare agent for you.
What’s a living will?
Sometimes called a personal directive, advance directive, or medical directive, a living will is a legal document in which you specify what actions should or should not be taken for your health in the case you are no longer able to make decisions for yourself. There are many, many different forms of living will, some several pages long and some as short as two.
Where do I start?
I’m so glad you’re ready to get started! You can check out some resources online with The Conversation Project’s Starter Kit — or visit us in theone of the local events happening in your city. Search here.
What questions do you have about advance care planning?
Have you had conversations about you and your loved ones’ wishes?
What advice would you give to others who are about to start having these conversations?
Dealing with grief during Covid-19
It all begins with an idea.
Disenfranchised grief is a term that was coined by Dr. Ken Doka, a licensed mental health counselor and expert in grief. He defines disenfranchised grief as, “Grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, socially sanctioned or publicly mourned.” This list of examples is long, but there is also a danger for losses experienced now in the time of Covid-19 for grief to become disenfranchised.
Anticipatory grief refers to a feeling of grief occurring before an impending loss. Typically, the impending loss is the death of someone close due to illness, but you may be feeling it if someone you love is sick – or you’re worried about them becoming sick while you’re physically distanced from them. Anticipatory grief can feel as big as regular grief.
Your feelings are valid, important, and real – and there are supports available for dealing with them. Sometimes learning that what you’re feeling is grief and that it’s normal can be helpful.
Related to Covid-19 Social Contact Restrictions
When You Can’t Be with a Dying Family Member
https://whatsyourgrief.com/cant-be-with-a-dying-family-member/
10 Ideas for Funerals and Memorials When You Can’t Be Together
https://whatsyourgrief.com/funerals-when-you-cant-be-together/
How to Livestream a Funeral or Memorial Service
https://whatsyourgrief.com/how-to-live-stream-a-funeral/
Funerals & Dying In Absentia: Inspiration & Tips During Covid-19
http://www.orderofthegooddeath.com/funerals-dying-in-absentia-inspiration-tips-during-covid-19
Burials & Funerals Under Covid-19
http://www.orderofthegooddeath.com/burials-funerals-under-covid-19
Jewish Grief and Mourning during the Covid-19 Coronavirus Pandemic
https://www.shiva.com/learning-center/coping/jewish-grief-and-mourning-during-the-covid-19-coronavirus-pandemic/
Covid-19 Grief Resources for Children
https://childrengrieve.org/about-us/news/208-covid-19
Pandemic Resources for Families Facing End of Life
https://www.homefuneralalliance.org/pandemic-resources.html?fbclid=IwAR3QMZi_RnsZKjuRZ9q89-ieX2oURO1Bbyes9oyVOIY241zDsj6XwTPdKR8
Death in the Time of Pandemic
https://www.oregonfuneral.org/pandemic_care_guide.html?fbclid=IwAR3lwdpy3mbdnxgtG49WD5hL2RN9zdZaFgG-6OqLHTdDRanF9qqPhNrO59w
Dying at Home During a Pandemic
https://asacredpassing.org/resources?fbclid=IwAR15iNZSZQSLNHmkqVM4GUJoNpipdnEvpv1C4rf3RW3Tpgq2t1–MKXE5R8
Pre-existing and/or Re-arising Grief
Reasons Your Grief Feels Worse Right Now
https://whatsyourgrief.com/crisis-grief-feels-worse/
Please Don’t Minimize the Death of Older Adults
https://whatsyourgrief.com/please-dont-minimize-the-death-of-older-adults/
Grieving the Death of an Elderly Loved One https://whatsyourgrief.com/grieving-the-death-of-an-elderly-loved-one/
Refuge In Grief: Life Gone Sideways?
https://www.refugeingrief.com/life-gone-sideways/
That Discomfort You’re Feeling Is Grief
https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief?fbclid=IwAR2e3uzXwy8S3Rk8lo8k-CdpzuEieG1Ek-lIkqg-rSPNdyWZuT59XWApuTE
There Are No Five Stages of Grief
https://www.nytimes.com/2019/02/28/style/self-care/there-are-no-five-stages-of-grief.html
Grief, Covid-19, and Missing My Person – Am I Normal?
https://www.refugeingrief.com/2020/03/25/grief-covid-19-and-missing-my-person-am-i-normal/
Grief Out Loud – Dougy Center for Grieving Children Podcast, Episode 139
https://www.dougy.org/grief-resources/grief-out-loud-podcast/
General Grief and Mental Health Support During Crisis
Taking Care of Your Mental Health During Coronavirus
https://whatsyourgrief.com/mental-health-and-coronavirus/
Talking About Death During Covid-19
http://www.orderofthegooddeath.com/talking-about-death-during-covid-19?fbclid=IwAR3YahzZjOWj1XZJaiPGWLBRAr_01VsFVB79qyFG3PSBJP43zne8ssIVgdg
Opinion: It’s Time to Talk About Death
https://www.nytimes.com/2020/03/27/opinion/covid-end-of-life.html?fbclid=IwAR3N0sP3LbiDfCM4gfEDVrIzlUi7UOzATA_4d0eQqOcwmZXqGy5zdhETWDQ
How to Support a Grieving Friend
https://www.refugeingrief.com/helper-overview/
Complete Your Advanced Care Directives
https://getyourshittogether.org/checklist/
https://theconversationproject.org/
How to Make Your Estate Plan During the Coronavirus Pandemic
https://www.npr.org/2020/03/28/823071317/how-to-make-your-estate-plan-amid-the-coronavirus-pandemic?fbclid=IwAR35qBkmPv_x5nvStmCXl4v16ICHCc1t6S5r2BTSYkqWRAr9Au0GAO9xvnU
Mental Health and Coping During Covid-19
https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/managing-stress-anxiety.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fcoronavirus%2F2019-ncov%2Fprepare%2Fmanaging-stress-anxiety.html
This guide was specifically developed to address concerns regarding grief during the Covid-19 pandemic. If you are struggling with legal or employment issues, childcare, housing or food insecurity, workers compensation, paying medical or utility bills, substance use disorders, mutual aid resources, or other concerns, check out this Philadelphia Covid Resource Guide.
If you have a suggestion for this list, please email phillydeathdoulas@gmail.com.