Death Doula Reading Week 1 Chapter 2

Reading Week 1

Chapter 2

 

2. What an End-of-Life Doula Does

“Preparing to die actually prepares people to live. I work in death—it enriches everything!”

Alua Arthur,
Going with Grace
www.goingwithgrace.com

You know that end-of-life doulas provide holistic, nonjudgmental, non-medical support to those nearing the end of life. They empower men and women to consider what a “good death” means to them and then support them as they seek that “good death.” They encourage those with life-ending illness to make the most of their last years, months, weeks, or days, so they can pass in peace. They also support the friends and family of the dying. 

But what does that look like, day by day? What does an end-of-life doula actually do?

This chapter looks at the broad range of areas where death doulas and midwives put their skills to work. 

You won’t apply or use every one of these techniques or services with every client. In fact, you shouldn’t! Your number one job is to listen to your client’s needs and start there. (See Sections 2.3 and 2.4.) However, after reading this chapter, you will be well prepared to meet those needs in a variety of ways. Your end-of-life “doula toolbox” will be well stocked.

2.1 Specializations

“Being a Death Midwife covers a wider range of opportunities than most folks think. They often visualize sitting by the bedside of the dying. Most likely, no one is an expert on all of the aspects. Find the piece that is your passion and anchor there. Much work is done with those who are very actively alive, and not even experiencing a health crisis. We need people to open doors, introduce concepts, be way showers as well as end of life companions, ministers, and ritualists.”

~ Patricia Ballentine,
Ordained Minister and Priestess,
Certified Death Midwife

End-of-life doula work has so many potential paths. The services that one death doula offers can look completely different from what another does, and neither is “doing” it wrong. As long as the basis of the work is nonjudgmental, nonmedical, empowering support for the terminally ill (at any age), elderly, or dying, it’s death doula work.

What are your options? Check them out below. Or click here for a concise overview.

TIP: Don’t feel overwhelmed by all the potential specializations! If you’re unsure what you should be offering or what your area of specialty should be, go back to your why. Why are you interested in death doula work? What has peaked your interest? Your path is hidden inside the answer to that question.

Also, be open to the fact that the more experience you gain, the more training, and the more education you receive, your specialty may shift, change, widen, or deepen. That’s okay. It’s good, in fact.

2.1.1 Elder Care

Elder care doula work could be considered a separate kind of doula work than death support. And yet, it also naturally fits alongside midwifery for the dying. Quite a few death doulas offer elder care doula services.

Elder care doula work involves practical, emotional, and (sometimes) physical (but not medical) support of elderly clients. This is also sometimes called companion care.

Your client may be healthy, well, and living at home. They may be living with a family member. Or, they may be a resident in a nursing home. With elder care work, the person you are serving may hire you, or you may be hired by a family member.

Elder care can look very different, depending on the needs of the client.

With one person, you may visit the client in their home weekly for a few hours, helping with light housework, providing companionship, and maybe running some simple errands for them or with them.

With another client, you may visit them in a nursing home setting, offering primarily social and emotional support, ensuring their basic needs are being met, and reporting back to the family that possibly lives far away and can’t visit regularly.

In either case, you are also hopefully offering more than just practical support, but also holding the space for them to talk about their lives, their legacy, and encouraging them to make the most of their final years. You are more than just a housekeeper. You are also a sort of life coach.

Unlike your terminally ill clients, planning for death isn’t the key focus. Yet, empowering your elderly clients to consider death planning may be a part of your job description.

In these ways, death doula work and elder care work fit together nicely.

Note that your elder care clients may one day become death doula clients. This may be a seamless transition, or there may be a gap in years of service. When there is a gap in service, they may come back to you during their final months because they remember your support fondly.

2.1.2 Providing Support and Comfort to the Terminally Ill

“While traveling, I met this woman from Germany on a bus, and we got to talking on this long ride. I found out she had uterine cancer, and she wanted to travel to her favorite places before she died. We spent time making meaning out of her life, and I realized then that I wanted to support people in preparing for their death. I never had seriously considered my mortality, and here I was having a conversation with this woman about hers. A year after getting clear that this was my life’s work, my brother-in-law became ill, and I supported him and his family through the last few months of his life. It was then I discovered the incongruency of the medical support team, the hospice team, and the funeral staff of how to really support families in this time.”

                                                                                        Alua Arthur,
End-of-Life Doula Going with Grace
 http://www.goingwithgrace.com/

Supporting those diagnosed with a life-limiting disease is possibly the essence of death doula work. However, this isn’t true for every death doula. Some choose to focus on just the very end, providing primarily vigil planning and support, and possibly home funeral guidance. (See Section 2.1.7 and 2.11.) For this reason, focusing on supporting those in the final years (as opposed to only the final weeks or days) could still be considered a “specialty” of death doula work.

As you can see from death doula Alua Arthur’s story, supporting a terminally ill patient may look more like life coaching, with an awareness of death planning—as it was with the woman on the bus, traveling after a diagnosis of uterine cancer—or it may be a much more intense, immediate support situation, like it was with Alua’s brother-in-law. 

The terminally ill or their family members may seek out your services early in the diagnosis period—possibly when they still have years to live—or they may not find you until the end is very near.

The kind of support and services you provide will vary based on the needs and health status of your client. But the essence is the same: empowerment, education, emotional support, and advocacy.

2.1.3 Respite Care for the Family

Respite care is short-term relief for primary caregivers. When someone is seriously ill, the ill or their family members may require or want someone present at all times. This can be difficult for the caregiver. Also, if someone is in the process of dying, leaving the dying person’s side can feel impossible. And yet, the dying process can take days (or weeks.) It’s simply not healthy for one or even two primary caregivers to be there every moment until the end.

An end-of-life doula may offer services to sit with an ill or dying family member so the caregivers can get a break. Sometimes, this respite care doubles as death doula care for the dying as well. In other words, the doula may be offering non-medical comfort measures, a compassionate ear, or helping them plan for their death; while also giving the caregivers time to themselves.

In other situations, the ill or dying person is not conscious, or they may be mentally unable to engage with the doula. The death doula will still use their knowledge and skills to provide a calming, peaceful presence for the ill or dying, but it’s a slightly different kind of support.

Not every death doula does respite care specifically. They may refer clients to respite care service providers or work alongside respite care professionals.

2.1.4 Facilitating Legacy and Life Review Projects

“No person dies without a reason. And no person lives without a reason. Life has to have purpose and meaning in terms of value and fulfillment. Without that, it is empty. In whatever work I chose to do, the purpose of my life is not to be something else or someone else, but to become more of myself.”

                                                                          Carol Neustadt,
Certified End-of-Life Specialist (CEOLS)

In the context of doula work, legacy projects are a way for someone— anyone, they don’t have to be dying—to create a physical remembrance of their life story or values. They are usually intended to be passed onto the next generation or be left as a memorial, a gift to those left behind.

Life review projects are similar to legacy projects, though there may not be an intention to share with others what’s created. They might remain private to the individual.

Both legacy and life review projects enable the terminally ill to consider the whole of their lived experience so far. Life review is a natural part of the dying process. Creating a project can take what’s typically an internal “project” and make it something tangible. This can be healing for not only the dying person but also their loved ones.

Some doulas specialize in facilitating legacy or life review projects. Not every doula offers this as a service, though even those that don’t make it an official part of their business may get clients who would like to work on a legacy project.

Section 2.5.2 will give you more guidance on how to facilitate legacy or life review projects.

2.1.5 Conducting Living Funerals

A living funeral gives your client the chance to be there when their family and friends are actively remembering and reminiscing about the client’s life 

Sometimes also known as a pre-funeral or living wake, it moves the celebration of a person’s life from after death to before death, so the celebrated person can be there to cry, laugh, and enjoy the memorial held in their honor. Living funerals can also help families and the terminally ill come to terms with the upcoming death and recognize a good life lived.

Living funerals may also be held for those who are healthy and well. They are not exclusively for the terminally ill. In this context, they can help people consider their own mortality and the kind of legacy they want to leave behind before they leave this world.

Death doula Emily Cross offers a living funeral ceremony intended for healthy participants.

Living Funeral attendee Sam Sanford had this to say about the experience:

“It can be hard for me to immerse myself in an experience, as I tend to maintain a detached, analytical stance and sort of view what’s happening to me from a distance rather than experiencing it. But Emily’s ceremony really opened my heart, both in making me think about my life and what I will leave behind when I die, and in hearing the other participants’ thoughts about their own lives. Hearing everyone’s reflections on their lives, messages to their loved ones, regrets and wishes read aloud was deeply moving and connected all the participants intimately. This heart- opening experience was the perfect preparation for the visualization of dying that followed, and when we were subsequently guided back to life, we felt real joy at being alive and having a second chance to create the lives we really wanted. It can be hard to market a ceremony like Emily’s – people see the word ‘funeral’ and assume it’s not for them. Our culture does not like to talk about death. But nearly everyone has the feeling that they are not living their best life, and a ceremony like this is a powerful way to make big changes toward living the life you dream of.”

2.1.6 Planning and Conducting Vigils

Planning a vigil is a common service offered by most end-of-life doulas. However, the degree to which the doula is actively involved can vary significantly.

For many death doulas, they are primarily a consultant with the family and the dying individual. They assist the dying and their loved ones to come up with a plan, but they don’t carry out the plan. The dying person’s caregivers do.

However, there are doulas that focus almost exclusively on “vigiling”—not just planning the vigil but also being there alongside the dying in the last days.

Just like a birth doula sits with an actively laboring woman and provides comfort, support, and advocacy, a death doula who offers active vigil care does the same—but for the active dying phase.

Frequently, because the active dying phase can take place over a number of days, doulas that offer these services will work as a team or with a partner.

Doulas who offer active vigil service are “on call.” That is to say, they must be prepared to go whenever the family or hospice professionals say the time is near. This could be in the middle of the night or on a weekend or holiday. While other aspects of death doula work can be scheduled, this kind of doula’ing can’t be planned in advance.

Sometimes, death workers who focus on vigiling prefer to call themselves death midwives. A childbirth midwife is there for the birth and transition into life; a death midwife is there for the transition into death. Others object to the title of midwife for death vigiling because the root of the word midwife means with woman—and of course, death doulas/midwives sit with the dying no matter what their gender. What you decide to call yourself, if you offer this service, is a personal choice.

2.1.7 Mourning and Post-Loss Support

Mourning doulas provide support for those who have recently lost a loved one. They may offer practical and emotional support. They may also help them with post-death arrangements, especially when death was sudden or there were no pre-existing plans.

There are some that confuse this kind of support with taking the place of a funeral director, but that’s not so. A mourning doula is not a funeral director. That said, the doula might refer clients to local funeral directors or help inform their clients of alternative options for disposition of the body. They may also discuss options like green burial and home funeral arrangements.

2.1.8 Facilitating with post-Death Home Organization

Also known as material artifact support, some death doulas specialize in offering post-death home organization. Going through the belongings of a friend or family member who has recently passed can be emotional and overwhelming.

Death doulas that offer material artifact support may work with the family after the death, or they may work directly with a person diagnosed with a life limiting illness. For a dying individual, making decisions on what to give to their loved ones, what to dispose of, and what to display (possibly as part of a legacy project) can be comforting.

Dying individuals often worry about “being a burden” to their family. Taking care of this typically post-death activity can relieve some of that anxiety.

Material artifact support may involve primarily consultations, or it may include hands-on support. This will depend on the desires of the client.

2.1.9 Pet Death Doula Services

Some death doulas specialize in helping people cope with the loss of their pets. They may create rituals or ceremonies for when a pet owner has to euthanize their beloved companion. They can offer practical and emotional support to both the pet and the owner before, during, and after the loss of a pet.

Pet death doula work is much needed. “It’s underestimated,” explained Ute Luppertz, a pet death doula in Portland, Oregon. “Most of our animals will die sooner than we do. The veterinarians are really compassionate, and they have to [put animals to sleep] every day, and other than that, people are on their own.” 

As pet death doula, both the pet and the people will be your clients. “I also take the animal into consideration,” explains Ute. “Because I do a lot of healing work and intuitive work. The animal is my client, and I support the person too. They are both my clients. I have done a lot of active support. People have hired me to be there during euthanasia. We prep the family; we prep the children. And when I say prepping, I mean, ‘How can we make this as inclusive as possible and as dignified as possible, and not run with a panic?’ when trying to figure out when is the right time to put an animal to sleep.”

Ute continues: “There are all these things that veterinarians say, and bless their heart, I understand why, but they will say, “You know when it’s time.’ And I cannot tell you how many people tell me that they didn’t know. And I say, I understand. It depends on the illness. Sometimes, it’s very clear. Very often, it’s a roller-coaster ride, and you don’t quite know when it’s time. It’s not easy to gauge. There are so many things that people think they should anticipate, and sometimes that’s the case, but you know, where you see a predictable outcome, usually with a terminal illness, it is predictable, but also, I tell people that animals only show anything when the stress is insurmountable because their DNA dictates to them, not just to show it. Because in the wild, they will not survive if they complain like you and I.”

Check out Ute Luppertz’s beautiful website:
Pets Point of View: Death Doula Service for Pets
https://www.pets-point-of-view.com

What Does Pet Death Doula Work Look Like?

Ute Luppertz’s shares two stories of what it may look like to support a pet and the family during death:

“I was working with one family for many years. And one of their dogs died, and he was also the special needs child of the family, so in his younger years, I did a lot of behavioral work with him when he was younger. They had us over the day before the dog was euthanized. We just talked about the what, if, and when. Because she [one of the dog’s owners] wanted it a certain way, with only her veterinarian, on a certain day, etcetera. And I said, “Look, I understand… but what do you need to look at if he takes a turn for the worse that night?” And the dog actually did.

“She ended up having to use someone she didn’t know. I know the company, it’s a group of veterinarians, they are absolutely fantastic.
“Next, the practical… and so I said, okay, you know how to do this yourself but… if you want me to, I make the phone call to the vet. I have the credit card. I will meet them at the door. I have someone come over to take care of the other dogs. I ask, “Do you need someone to bring food?”

“Simple things, but when you’re in the thick of things, very practical things. What I did the entire time is I gave them space, husband and wife, to be with their dog. Everything else was taken care of, and it looked like a very practical measure. However, I also made sure that the energy field was harmonious for him by the time the vet came… I would check and ask, Are there Kleenex? Do we need to do this, do we need to do that? Do you want to bring him to the cremation place today? Do they know you are coming? What else do you want me to do?

“In essence, it’s something that anybody could do, but because I understand the nature of the situation, I do it in a very calm way. I make sure everybody is supported. I make sure if they need their favorite junk food or a glass of water, whatever it is, I make sure they have it. Do they have blankets for the dogs because they might urinate or defecate after they take their last breath? Simple things, but they are so massively important.”

“I had another situation with a dog… they called me for the euthanasia, and the dog was very far gone even prior to the arrival of the veterinarian. He probably would have died within an hour. Totally gone. And I arrive at the scene, and the whole group of girlfriends are gathered around the dog, and that was good. And then the dog started very labored breathing, and there is the same thing when you go into labor with giving birth, it is the same thing with death. It’s called the death rattle… and it doesn’t look pretty when you don’t expect it from a pet. The women were just getting really emotional, they clustered around him, and I could feel he was in distress. And I said, ladies, you need take one step back. This is very natural. He is preparing to die. And the breath gets very erratic, and it’s not pretty. But this is what he has to do to separate from his body. This is a very natural process. One of the girls asked, “Is he in pain?!” And I said, no. He was not mentally there, he was far far gone. But he could sense when they got really emotional, I said please, just take it a notch down. It will not help him. I have seen animals pull themselves back in when someone says, ‘Oh no Fluffy, please don’t go, don’t go, don’t go.’ And I completely understand it. But if someone hires me for that occasion, I say, “What can we do to keep it calm and peaceful for your dog?”

“Different situations call for different interventions. What it comes down to it for me is… how can I create the most peaceful environment possible for the animal to do what they need to do? And it’s also super super intense for the person.

“If people work with me ahead of time, we can usually achieve a better situation. We know we need to pay attention when is the right time for euthanasia and how… but also, how can you all prepare one another? Tell each other stories, write letters, do whatever it takes. I like rituals, any kind of traditions, every culture has something ritualistic around death, and I encourage people to think about what works for them. I don’t care what it is. It’s not that you have to do something religious. But something that gives you a feeling of significance, that the death is not less because it’s not a person.”

2.2 Tools of the Trade – And How to Use Them

The primary tools of death doula’ing are your own heart and soul. There are, of course, also physical tools—practical items—you may want to have on hand or easily available to you.

What you bring with you will depend on if you’re meeting a client for an initial consultation, reviewing advanced care directives, working on a legacy project, or sitting by the bedside. What you bring for a vigil will be different from what you bring for a mourning doula visit, post-death, or what you might bring for a living funeral ceremony. You also may not always know what awaits you when you’re called in to support someone.

The following list isn’t broken up into specific categories of service because many of the items can be used in multiple settings.

Your use of items also depends on your style. For example, some may approach working on advanced care directives in a formal, meeting style way. Others may approach it with a spiritual, more ritualized style. In one case, writing devices will be your primary tools. In the other case, having lit candles or even relaxing music playing while you work on the paperwork together may not be unusual.

Here are items you may want to have available or on-hand as you work as a death doula or midwife.

Candles

Make sure you have both unscented traditional candles as well as electric, “flameless” candles. You can’t use real candles where an oxygen tank is in use or in the hospital environment. This is where electric candles can really come in handy.

Also, for your real-flame candles, have something to place the candle in or on, both for safety’s sake and for beauty. 

Aromatherapy Tools

Appealing to the sense of smell can calm the dying and the well. You may want to use aromatherapy tools during consultations, visits with your client, or during vigiling.

 

Some people have allergies or sensitivities to aromatherapy oils, so always make sure to discuss this with your clients and their visiting friends and family before you use them. If you’re working inside a hospital, hospice, or nursing home, check with staff before using any aromatherapy tools that will diffuse the scent beyond the bedside of your client.

Also, be cautious with using oils on the skin, especially on the terminally ill or elderly. Aromatherapy oils can cause irritation and even serious burns. They can also interact with medications. Those who are not well are at higher risk for these negative side effects. Those who are not fully conscious may not be able to tell you if something is causing pain or physical damage.

If you bring a diffuser for the oils, make sure it is flameless. Choose and use the oils lightly. Don’t overdo it. Just a hint of scent can be best.

Note: Aromatherapy oils can be dangerous if used improperly. They can cause damage to a person’s health, skin, or lungs. Make sure you are well educated in their safe use before you add them to your toolbox.

• • • National Association for Holistic Aromatherapy: Exploring Aromatherapy Safety 
      https://naha.org/explore-aromatherapy/safety
    • Aromatherapy Safety: Alliance of International Aromatherapist 
      https://www.alliance-aromatherapists.org/aromatherapy-safety

Softer Scented Items 

Using scent to calm and comfort doesn’t have to be limited to essential oils. You might also consider having other sources of pleasant scents, like…

• • • Dried herbs
    • Sage sticks
    • Twig of rosemary
    • Mint leaves
    • Cinnamon sticks
    • Fresh or dried flowers

You may consider just having these items nearby for a quick whiff or on a table by the bedside. As with aromatherapy oils, always talk to your clients first about possible allergies or sensitivities before you bring anything like this into their environment.

Gentle Moisturizing Creams, Lotions, or Massage Oil

Lotions, creams, and massage oils can be used to offer physical, non-medical comfort. Having a variety of options—including hypoallergenic non-scented oils, and perhaps some with soothing or relaxing scents—is a good idea.

As with aromatherapy use, always ask your client and their family first about allergies or sensitivities to chemicals or scents.

Music Player and Auditory Tools

The sense of hearing is one of the last to go in the dying phase. Having relaxing or beloved music softly playing can be a source of comfort.

If you meet the client while they are able to communicate their wishes, you can ask what music they prefer or would enjoy. If not, talk to family members about what they think their relative would have wanted if they could tell you.

You could play music from your smart phone, but having a Bluetooth speaker (preferably battery operated or cordless) can be better. You will still likely want to play the music softly, but the quality will be higher.

You may also want to have headphones with disposable ear bud tips. Another option is over-the-ear headphones and an alcohol-based spray cleaner to sanitize them after client use.

Besides music, you may also want to have available:

• • • Books on tape—especially sacred texts
    • Guided imagery recordings—ones you’ve created yourself or purchased recordings

Visual and Audio Recording Devices

You could use your personal phone to take photos or video, but there are several reasons why this may be less than ideal. For one, you’ll want to protect the privacy of your clients. Having your personal pictures and video along with client images on your phone could make that difficult. Also, you may want or need to use your phone for something else.

Whether you decide to use your personal phone, an older smart phone you’re not using personally, a camera, a video camera, a laptop with video or audio recording functions, or an old fashioned audio recording, having these available in your death doula work can be helpful.

You might use these recording devices to…

• • • Take pictures for the family—like to capture a touching moment when a family pet lies on the bed near their master
    • Video tape or audio record life stories, so the family and friends can watch and remember these tales
    • Help create a legacy project

Charging Cords and Backup Batteries – For Everything

For your personal phone, a smart phone you might be using to play music with or record video with, for the Bluetooth speaker, for the flameless candles, (possibly) for the aromatherapy diffuser.

Art Supplies and Journaling Paper

Art supplies may come in handy for legacy work, especially if your client wants to go this direction when creating one.

Art supplies can also be nice to have simply for comfort or distraction, for clients or family members. Adult and even children coloring books may come in handy.

Blank journals or fancy journaling paper can be used for legacy projects, letter writing, or simply self-reflection.

They may also be used to keep a diary, especially if individuals holding vigil changes over the hours and days. This way, there is continuity in the narrative for the living.

A Notebook or Legal Pad

You always will want to have a notebook, legal pad, or computer to take notes. You want to keep track of the needs of your clients, work on paperwork or consultation paperwork, mark down changes in plans, and so on.

A big part of your role is helping plan. Writing these plans down is essential. Plus, you’ll want to mark down questions you need to research for your client.

Even if you’re not specifically working on formal paperwork, you will still want to have notes. Right now, when you’re starting off, you might figure you can remember the details of each client’s situation, their likes and dislikes, their fears and desires, etc. However, as you gain clients, it will naturally be harder to keep track. Better to develop a habit of taking notes. 

Official Forms, Documents, and Guides

Especially if you’re helping people with advanced care directives, or helping to create vigil plans, you might have forms—ones you’ve created yourself, purchased, or found for free online—that you use to guide clients.

You’ll want to have at least a few copies of your primary documents and forms.

Sacred Texts

You might want to keep on hand at least the most popular sacred texts from various religions.

That might include having a copy or excerpts from…

• • • The Bible
    • The Koran
    • The Torah
    • The Book of Mormon
    • A hymn book or two
    • A Jewish prayer book (known as a siddur in Hebrew)

You can have all these in electronic format. Don’t picture carrying around a huge stack of books!

As a doula, you are not there to convert or pressure any client into any particular belief. That would be unethical.

However, you will likely serve people who gain comfort from religion. Sometimes, even someone who has not been actively involved in religion in decades will suddenly wish for someone to read Biblical or other sacred texts to him or her.

The family may have these texts available. Many hospitals and hospices have some texts available to borrow. 

But, just in case, it can be nice for you to be prepared.

Books of Poetry or Classic Tales

Besides sacred texts, having a variety of secular literature to read out loud can be nice. Look at poetry and even classic children’s story collections.

It’s also possible that your client will request a specific book or books to be read to them. You should accommodate this as best you can. If they don’t have the reading material available for you, remember that most libraries offer electronic book borrowing.

Non-Latex Gloves

You won’t be providing medical care, but you still will want to have non-latex gloves available. You can use them when applying physical comfort measures, like helping to apply Vaseline on dried out lips, or use them if you are gently applying massage oil or lotion to the arms, hands, or feet of your client.

Any activities of daily living that a family member may be expected to do, you might find yourself also providing or assisting with. This can include helping shift the position of the terminally ill client, helping with bathing, or assisting with keeping them clean and dry after urination or bowel movements.

How involved you’ll be with this kind of care will depend on your comfort level, the client’s, and their family. It will also depend on the environment. For example, in a hospital, hospice, or nursing home, there are certified staff who take care of these issues.

If the family has decided to personally wash the body of their loved one after death, you will want gloves to assist or stand by during this process.

Hand Sanitizer

You’ll want this for both before you walk into a client’s room or home—you don’t want to be responsible for passing on illnesses—and after working with clients. 

In a hospital, hospice, or nursing home, there will likely be plenty of places to wash and sanitize hands. Still, it’s good to have your own just in case.

(Inexpensive) Washcloths

When possible, it’s best to use the washcloths available in the person’s home, or those provided by the hospice or hospital. However, in the event nothing is easily accessible, having some cheap washcloths on hand can be useful. If they are cheap, you won’t feel bad throwing them away after use.

They can be used to carefully dab the forehead with cool water or be used to clean up spills or accidents.

Chapstick and/or Vaseline

In the last week or days of a person’s life, dry lips and mouth can be a problem and a major source of discomfort. Having something to relieve that discomfort can be helpful.

If you use something like Chapstick, use a gloved finger to apply it. Don’t directly apply the stick to the lips, unless you will then leave it with the client.

Oral Swabs

The mouth can feel dry and become uncomfortable at the end of life. Dental oral swaps can be used to apply moisture. These are sometimes known by the brand name “Toothettes.”

The swabs can be simply dipped in water or a saline solution.

Sometimes, a dying person doesn’t want to drink, but gentle sucking on fluid through a dental swap can be comforting. They can be dipped into a favorite drink for flavor. 

CloSYS Alcohol Free Mouthwash

Oral swabs may used to apply mouthwash, to help give a clean, fresher oral experience, but many mouthwashes are too strong for those near the end of life or in the active dying phase.

Jason Olson, a dental hygienist and former certified nurses aid, recommends using CloSYS Alcohol Free Mouthwash. This is a non-prescription mouthwash that is gentler than more common dental rinses.

Library of Books on Death and Dying

You might not be carrying around a library of books of death and dying—but having books available for clients to borrow might be something you consider. These might be books you read while training for your role as a death doula.

You might have a laminate sheet that lists your books open for borrowing.

TIP: Look into purchasing Barbara Karnes booklets on death and dying. They are easy to read, inexpensive (especially when bought in bulk), and can be a  source of comfort and reassurance to your clients and their families. Karnes books on death and dying are considered classics. If you have not read them yet, you should. https://bkbooks.com

Extra Change of Clothes for Yourself

Always have an extra set of clothes with you, either in your bag or in the car. You never know when you may get soiled with body fluids, especially when you’re working with the ill.

Also, if you’ll be sitting vigil for hours, you may want a fresh change of clothes available—even if you’re not necessarily “dirty.”

Should you wear scrubs? It’s your choice. There are advantages and disadvantages. 

Advantages include easier washing and care, you don’t have to worry as much about them getting dirty or stained (it’s not your favorite blouse), ease of movement, and it can indicate to healthcare professionals that you, too, are working in a professional role.

A disadvantage is they may make it look like you are part of the healthcare staff (which you aren’t.) They can also trigger negative feelings in clients who have had a bad or traumatizing experience with medical care.

TIP: What you wear can have an effect on those you are caring for. According to this fascinating article on death doula and hospice clothing choices (https://www.racked.com/2017/10/18/16469252/death-doula-clothing-hospice), wearing all white flowing clothes, all black, or reds can be problematic.

Care Items for Yourself

Especially if you’re sitting vigil, you will want basic care items with you, for yourself: toothbrush and toothpaste, mouthwash and/or breath freshener gum, a water bottle, snacks, or protein bars.

You might want to have items that you use for comfort after being with a patient as well. Don’t forget about your own emotional and physical care! For example, you might keep a private journal. You may have items you use after meeting with someone for ritual or spiritual comfort. You may have your own private music and headphones.

A Bag, Box, or Carry-On Suitcase

You will need something to carry all this in! Depending on what you’re carrying and when, you might have a simple backpack, a more formal briefcase, or even a small carry-on suitcase with rollers.

Your Pet-If They Are a Trained Therapy Animal

Yes, your pet may be a “tool” you include in your “doula bag.” This will only be true, however, if your animal is a trained therapy animal (https://www.akc.org/canine-partners/which-is-which-therapy-dog-or-service-dog/). You would not want to bring along your pet if you and they have not formally studied how to provide therapy through animal service.

As always, be sure to confirm with your client and their support team if a therapy animal is welcome and if there are any allergies (or animal fears) you should know about. Also, if the client has their own pet or animals present, bringing a therapy animal may not be appropriate.

2.3 How to “Hold the Space” for Someone: Your Most Vital Service

“Self reflection is key to cultivating an ability to hold space for others. In my opinion, too many enter this work because they feel enlightened by their own version of ‘death acceptance’ and wish to peddle that for others. We need to learn how to get our own agendas out of the way to meet folks where they are at.

Cassandra Yonder,
Community Deathcare Activist and Educator
www.deathcaring.ca

One of the most important services you offer is “holding the space.” If you are to succeed as a death doula, holding space for the dying and their loved ones will be the skill you must practice and perfect (as much as possible.)

You will likely find yourself holding space…

• • • During initial and subsequent consultations
    • When sitting with your client, for any reason
    • When facilitating advanced care directive planning
    • When facilitating funeral and/or burial planning
    • When vigiling
    • In the moments just after death
    • In sitting with a mourning family 
    • Any time you are interacting with anyone as a doula

What does it mean to “hold the space” for someone? There’s no agreed upon definition, but it might be defined simply as…

• • • Being with a person without judgment
    • Accepting their emotions as they are, without trying to fix them or take them away
    • Truly listening to what they are saying, without spending time in your head trying to “figure them out” or come up with a solution or response
    • Allowing your emotions to be present too, without having them overtake you. (It’s okay to tear up or laugh—but don’t lose your composure. Don’t make this about you.)

You likely know what it feels like personally when someone “holds the space” for you. Getting in touch with how it feels when someone holds the space for you can help you learn how to hold space for others.

When someone holds the space for you, it can be an amazing, healing experience. Calming. Comforting. Like everything is going to be okay, even if things are not “okay.”

It is the difference between being vulnerable with someone and finding yourself feeling defensive or shutdown—versus being vulnerable and feeling understood and accepted just as you are.

When someone tries to “fix” things too quickly or jumps in too fast with their own stories, you walk away feeling as bad or maybe even worse than when you shared your struggle.

When someone “holds the space” for you, you feel lighter, more at ease, and loved. You feel this way even if you’re actually more in touch with the depth of your sadness or difficult emotion.

A person holding space for you gives you permission to be with your intense emotions, and this allows your pain to flow. Flow is how emotions move through us. Trying to stop the flow doesn’t make it better. It creates flooding. Overwhelm. Going with the flow is how we process what we’re experiencing and (eventually, in our own time) move past into the next phase or emotion.

Whether you’re meeting with a client for the first or tenth time, or you’re sitting vigil by the bedside, here is how to get better at “holding space” for someone.

TIP: Practice these techniques and skills with your friends and loved ones. It’ll help you be a better doula and a better person. Ask a trusted friend to actively practice and provide feedback. In other words, let them know you’ll be holding space for each other for five minutes each. Then, after, agree to share with each other what helped and what could be worked on to improve your skills.

Get comfortable with silence.

“It’s not about you! Stop overlaying your own interpretations, belief structures, world view… Be present and attentive, but not overbearing. Get comfortable with silence. Words are not always necessary.”

Rev. Angie Buchanan
http://deathmidwife.org

We are uncomfortable with quiet in conversation. This is why we sometimes feel the need to quickly jump in with a solution or personal story. Resist sharing a personal story or experience.

Learning to get comfortable with silence is essential. Giving someone time and space to sit with what they just shared can help them process their own feelings and allow them time to think of what they want to share or say next.

Sometimes, an understanding nod, sound of affirmation (“mmm… “) or encouragement to share more (“Tell me more.”) can help. Sometimes, silence is what’s needed most.

Let go of having the “perfect response.”

When you make friends with silence, it’s easier to let go of having that perfect response. We can get so busy with trying to think of what to say that we’re not even listening to what the person in front of us is saying. 

When you’re comfortable with not having the “perfect” response, you can sit and listen.

You’ll spend less time trying to think of what you’ll say, more time “holding the space” for your client.

Let go of thinking you know “exactly” what this person needs or should do.

Being a doula is not about making decisions for others or telling them what a “good death” looks like. That’s not the doula’s role.

Here’s some wonderful advice from death doula Carol Neustadt:

“It’s not my story, so don’t get caught up with what’s going on with that patient and their family. Especially when I have to work with children, and I think, god, I would never do that. One of my managers, best advice I ever received, said, ‘Carol, it’s not your story.’ I thought, God, you’re so right, and I just need to be the greatest observer that I can be and just allow their story to unfold. Not to judge, to know this is exactly what needs to be, at this exact time for this person, and that on some greater level, there is more going on than I can understand. I tell myself all the time; this is not your story. It can be fun too, because then you’re just letting whatever is going to happen in the moment, and it writes its own story. And it can be magical.”

Carol Neustadt,
 Certified End-of-Life Specialist (CEOLS)

Be okay with “Not fixing” things.

You can’t take away painful feelings, and you really shouldn’t even aim to do so. People don’t want someone to “fix” their problems—they want someone to witness their pain and feel understood.

This can be a tricky space to be in since one of your roles is providing informational support. However, there is a fine line between offering guidance and empowerment, and “fixing” things and offering unasked for solutions. There is also a difference between offering options, compared to suggesting that you know “the best” option for them.

This is another skill you will learn with practice and time. 

Be okay with death not being “beautiful.”

In the end-of-life doula world, there is a focus on helping people have a “good death” and make choices. This is noble, and throughout this guide, helping people consider what a good death means to them is discussed in great detail.

However, death is not always beautiful or peaceful. Even with planning and support, death can be painful, messy, and heartbreaking. The last thing anyone wants is to make a dying person feel like they are “failing” at having a “good death.”

You can’t “hold the space” for someone if you’re concerned they are not getting the “good death” that they envisioned or that you hoped for them. Holding the space requires letting go of all expectations and just being present with what is.

TIP: Read this beautiful blog post on  “The Dangerous Myth of a Good Death,” by Kathleen Clohessy (http://blog.sevenponds.com/so-you-got-the-news/the-dangerous-myth-of-a-good-death).

Be comfortable (or at least work on getting comfortable) with your own mortality. Get clear on your personal thoughts on death, dying, and even the afterlife.

You cannot “hold the space” for a person who is dying if you haven’t yet confronted your own thoughts on your mortality and what a “good death” means to you.

Taking time to consider what a “good death” means to you isn’t so you can “figure out” what a good death means generally. That will differ from person to person. This is so you can know what a “good death” means to you personally, so you can support another person as they consider what a “good death” means to them personally.

It’s also vital to consider what it would mean for you if death didn’t go as planned for you personally. (For example, if it came on suddenly, or if your last days were terribly painful.) 

If you have not confronted these questions and thoughts yourself, you will automatically find yourself ruminating on them as you meet and work with clients. That means you won’t be able to be fully present as you sit with them. You’ll be in your own head, trying to figure things out for yourself.

See 3.1.2 for more on how to get comfortable with death and dying.

Be aware that anger—even if it seems to be directed at you—it’s likely not about you at all.

Emotions may run high for the dying and their loved ones. For that matter, friends and family of the dying may have more difficulty with their emotions than the dying person. Anger is just one possible emotion that may arise when you’re working with a family.

Of course, you should never accept or tolerate abuse. That said, if and when a family member lashes out at you, or loses their composure; try to remember that the anger is not about you personally.

Anger can mask fear and sadness. The person may be angry at the illness, at god, at circumstance, or at the situation. They may even be angry at the dying person—for past wrongs or even for “dying on them.”

However, you (or anyone) may become the target of these intense emotions. The best thing you can do is remind yourself that this isn’t about you. Breath deeply. Try not to go into defensive mode. And, as long as you’re not in danger of physical harm, continue to “hold the space.” That may mean standing there and listening quietly until the person calms themselves down. That may mean stepping out of the room.

Whatever you do, don’t fight back or respond with anger. More about handling difficult family emotions in section 2.6.4.

Carefully consider the time to offer options or provide education.

One of your vital roles is to empower your client to make decisions for themselves. This often means providing them with information and options. Death is less scary when you know what to expect, and few people know what to expect.

People frequently don’t know all their options, either. They may only be familiar with what has been offered to them by their medical team, or with what they’ve seen themselves when friends or relatives have been ill. For example, they may not know that home hospice care is a possibility. They may not know about green burial or home funeral.

You will want to help your client understand their options—but you don’t want to offer that information at the wrong time. This can interfere with your role as a compassionate listener.

You’ll learn with practice when is the time to “hold the space,” and when is the time to share your thoughts and suggestions.

TIP: Ask your client if it’s okay if you jot down notes as you talk together. Ensure them that this will help you listen to them better. This way, you can “hold the space” while they talk and share their wishes, fears, and questions. Then, after, offer suggestions or information. It’s better to ask your client to give you a moment to jot down a note, than to interject with information or education too soon or at the wrong moment.