Adapted from THE DOULA BUSINESS GUIDE:

How to Succeed as a Birth, Postpartum or End-of-Life Doula, 4^th Edition

Throughout time and in cultures all over the world, there have always been those individuals—usually women—who care for birthing mothers and the sick and dying. Today, professional doulas are coming into the cultural mainstream. The emerging role of the end-of-life doula is gaining traction, helping to transform how we meet unmet needs at the end of life, with more men being drawn into the field.

Six Guiding Principles of the Doula Model of Care

1. Non-medical support. Doulas refrain from performing clinical care.
2. Non-judgmental support. The doula does not impose her/his values on the client. Care is based on the client’s values and goals, even if those differ from values cherished by the doula.
3. Family-centered approach. The individual and their family form the unit of care. Doulas do not take the place of partners, family members, or other care providers. Rather, they seek to support the optimal involvement of loved ones.
4. Holistic care. Doulas recognize the biopsychosocial and spiritual aspects of the whole person and provide services in the context of this understanding.
5. Doulas promote informed decision-making and foster maximum self-determination rather than dependency for the individual and family.
6. Team members. Doulas are collaborators with a special role who defer to other experts for concerns outside their scope of practice.

How Do End-of-Life Doulas Help Families?

End-of-life doulas provide a wide range of services to support the dying and their loved ones. Typically, doulas specialize in areas of personal interest and expertise, with each doula creating her/his unique practice and set of services. One doula may emphasize facilitation of advance care planning, while another becomes a home funeral guide, companion caregiver, or bedside vigiler. Both the doula and the family seeking help are encouraged to explore whether the family’s needs and the doula’s services are aligned. The following are some of the ways that doulas help families.

• Navigate tough decisions and make informed choices.
• Provide respite care to relieve caregiver burnout.
• Comfort and support the dying person.
• Facilitate advance care planning.
• Honor the dying person’s wishes.
• Create a legacy project.
• Educate loved ones about the dying process.
• Attend medical appointments with a declining person, as a witness, note taker, support person.
• Coordinate care for the death vigil.
• Support grieving family members.
• Facilitate rituals, memorials, celebrations of life.
• Provide guidance for home funerals and/or green burial.
• Provide logistical household support.
• And more!

Author

Patty Brennan is the owner and visionary force behind Lifespan Doulas, a doula training and certification agency for birth, postpartum, and end-of-life doulas. For 40+ years, she has been a doula, midwife, educator, author, nonprofit executive, and entrepreneur. Patty has personally trained over 3,500 people to become doulas. She is the author of The Doula Business Guide: How to Succeed as a Birth, Postpartum or End-of-Life Doula Business, 4^th Edition and The Doula Business Guide Workbook: Tools to Create a Thriving Practice, 4^th Edition

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This is dangerous thinking that can lead to feelings of inadequacy and remorse for things beyond our control. In the field of end-of-life care, in fact, almost everything is beyond our control. What we’d like to offer are a few strategies for controlling what we can, along with encouragement to let go of the need to be there for every patient. It’s simply not possible.

Here are approaches we’ve found helpful.

1. Prioritize your visits as best you can. Ask your referral sources to indicate if a patient is imminent. That patient can then be scheduled for your earliest opening.

2. Reach out to the patient or family as soon as you receive the referral, even if there is a delay in how soon you can make the visit. The family will know that you are trying. Document that you have made contact, with the date you intend to provide the visit.

3. Ensure that you have a timely way to be notified of patient deaths. We have unfortunately both arrived at visits (sometimes driving a long distance) only to be informed by the family that the patient has passed away. This is a painful scenario for grieving family members and reflects badly on communication between team members.

At our inpatient unit, a white butterfly is placed on the door when a patient dies, so that all staff are aware. In field settings, an email can be sent, or massage therapists can take it upon themselves to confirm visits in real time with the hospice team who should be the first to know about a death.

4. Express condolences to the family in a way that feels appropriate. Once a visit has been scheduled with the family, a relationship and expectation of service have been established. A phone call or a sympathy card lets the family know that the visit was important to us, and that we are sorry for their loss.

5. Resist creating a story starting with the word “I.” This includes “I should have,” “I wish I,” and “If only I.” The gist of these messages is that we are not doing enough. I don’t know anyone in end-of-life care who is not doing enough! In fact, we are likely already doing too much. As humans, we have a right to attend to our own needs for rest, recreation, and reasonable work hours.

6. Accept that we will not be able to attend to every person who might want our services. Some people will die before we can provide massage for them. This is a reality that we can’t control or change. One of our esteemed colleagues shares that she finds it helpful to turn this issue over to a Higher Power, asking that God (Spirit, the Universe) help guide her to the people who need her most. This helps her to feel that she is seeing the clients she is meant to see, and to trust that the others received what they needed to complete their journeys.

We’d love to hear from others. How do you cope with the loss of patients who die before you get there?

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Let’s talk about the challenges first. In the early years of our careers, neither of us managed to work directly with hospice. Instead, we found that doors were more open and clients more plentiful in the field of oncology massage. We sought training with the best teachers we could find. We spoke about the benefits of massage at cancer support group meetings, often providing demos of our work. We provided foot massage in chemo infusion rooms and chair massage at cancer 5Ks. Little by little, our work spoke for itself, and we began to receive referrals by word of mouth from satisfied customers.

Eventually, we found our way to hospice. But it hasn’t always been smooth sailing. One of us started as a volunteer, but found the travel to be too costly and burdensome to continue. One of us contracted with an agency that kept “losing” our invoices. We’ve both been let go – suddenly and painfully — due to budget constraints or new management that didn’t see the value of massage. Hospice is a competitive, fickle business.

And yet we stay with the work. Why?

We stay with the work because we simply can’t imagine anything we’d rather do with our time and our skills. This work is remarkable. Compelling. Awe-inspiring. In short, it’s the toughest job we’ll ever love.

A few survival strategies, if you feel the same way we do . . .
1. Don’t give up your day job, if you have one. That way, you’ll have something to fall back on.
2. Take a lesson from the clients we serve. Live in the present moment, knowing that change is part of life, and nothing lasts forever.
3. Accept that the venue of your work might change multiple times over the course of your career.

And yet . . .
There will always be people who are sick, people who are receiving hard news, people whose diseases can’t be cured. A large number of these people would love the gift of gentle touch. We just have to continue finding them.

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Touching Story #1.

I arrived at the room of one of our young patients. She was lying on her side with her eyes closed, actively dying. Her beautiful face reflected the glow of several strings of twinkle lights that her friends had strung around her hospital bed – lighting up the bed rails, the head and foot boards, the legs of the bed, and the frame. It was spectacular!

Touching Story #2.

The name sounded familiar. Sure enough, one of our new admissions was a patient I had seen before, in 2015, while he was on service with another hospice company that I worked for at the time. This patient achieved an
unexpected remission and discontinued hospice service. Now, nearly a decade later (and having been able to raise his children to young adulthood), he has by chance signed on to a different hospice where I now happen to work. It was a teary reunion.

Touching Story #3.

Our chapel is often used for funerals and memorial services. But last weekend, a beautiful bride and groom exchanged vows and rings in an intimate wedding ceremony at the T. Boone Pickens Hospice Center so that the
groom’s mother with end-stage cancer could attend. A reminder of the sorrow and the joy, the beginnings and the endings, the laughter and the tears that help us know we are alive.

Shared by: Cindy

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I contacted the patient’s husband and explained that I received a massage therapy referral for his wife and would like to visit with him regarding her needs and schedule a time to provide the massage.

He immediately said, “NO, my wife is on hospice and a massage will not be good for her.”  I explained the purpose of my visit is to provide comfort and relaxation, and the touch would be very gentle.

He then explained his daughter teaches massage at a massage school in another state.  He knows exactly what massage is, and his wife is not a candidate. I thanked him for his time and ended the call.

It’s unfortunate that this gentleman is uneducated on the benefits of gentle touch. It’s also unfortunate that his wife will not experience the comfort and relaxation gentle touch can provide. However, I know he was protecting his wife as he should.

The misconception of the word “massage” is very common. Education is an ongoing endeavor for all of us. We must look for new words to describe what we do, when people are open to having the conversation.

Some people will not be able to overcome their bias and preconceptions, and the only thing to do (after we’ve attempted to educate) is to let go and honor the fact that patients choose the people who become the gatekeepers of their care at the end of life.

Ultimately, she was not an appropriate candidate for massage because her primary person couldn’t get behind the idea. The unit of care is the family, so he’s part of the equation.

Because I continue to play the scenario in my head, I know I’m taking this rejection too personally.  I’m working on letting it go and hopeful that if you have experienced something similar, this story might help you let it go as well.

Shared by: Susan

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Let’s look at it from two perspectives – massage for the average person and massage for those with chronic and advanced illness.

Massage for the Average Person

As a provider of massage for the average person – those who are stressed from multi-tasking, pain relief for weekend warriors, and general relaxation – I have a cancellation policy in place. The nice thing about having a policy is that you, as the provider, can determine if you will enforce it as you consider each situation. It’s in place for those few who abuse my time. I’ve used it occasionally and it either stops the behavior, or the client moves on.

Massage for Chronic/Advanced Illness

As a provider of massage for those with chronic or advanced illness, I’ve learned that situations can arise very suddenly that are out of the client’s control. For this population, I do not have a cancellation policy.

Here is an example of a day I had recently. Seven patients scheduled, all of which required travel to homes or care facility, and were confirmed the day before.

Patient 1: massage provided.

Patient 2: massage provided.

Patient 3: fell during the night, broke her hip, and had been transported to the hospital.

Patient 4: massage provided.

Patient 5: declined massage – Alzheimer’s patient that did not want to be touched that day.

Because of the two cancellations mentioned above, I was ahead of schedule, so stopped at a park and waited 45 minutes.

Patient 6: caregiver met me at the door and said, “I’m sorry, I should have called you. She’s having major bowel issues and doesn’t want a massage.”

Patient 7: massage provided.

In my experience, a cancellation policy is not appropriate when serving this population. I can go weeks without having a day as described above.  However, I find that I must be flexible when such things do occur. What is your cancellation policy? Would love to hear from you to  better understand the process of other therapists who work with those who are ill.

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Care plans typically include a problem that is being addressed, a plan, and an outcome that the therapist hopes to achieve. The outcome should be specific and measurable, something like “client will report reduced pain” rather than “client will feel better.” Since many clients are nonverbal at the end of life, it can be helpful to have templates for measurable outcomes that don’t rely on client input.

Below are some sample care plans that are used at Faith Hospice, which can be adapted for use in other environments.

Problem: Pain

Plan – Light massage to upper and/or lower body as tolerated and appropriate.

Goal – Patient will report or exhibit signs of reduced pain with massage therapy, including slowed respiration, reduced need for PRN medication, and/or improved sleep.

Problem: Anxiety (can also be used for the problem of agitation)

Plan – Light massage to upper and/or lower body as tolerated and appropriate.

Goal – Patient will report or exhibit signs of reduced anxiety (or agitation) with massage therapy, including slowed respiration, absence of restless movement, and deeper sleep.

Problem: Dry Skin

Plan – Light massage with emollient cream to accessible areas of skin on upper and/or lower body as tolerated and appropriate.

Goal – Patient will exhibit signs of improved lubrication of the skin with massage therapy, including reduced peeling and itching.

Sometimes there isn’t really a presenting problem. The dying person’s symptoms are well controlled. They simply wish to enjoy massage! For that category, we sometimes use “general discomfort” which can be anything from feeling sore or stiff from inactivity to a vague sense of desire to be touched. Here is how we handle this category at Faith.

Problem: General Discomfort

Plan – Light massage to upper and/or lower body as tolerated and appropriate.

Goal – Patient will report or exhibit signs of enhanced comfort and relaxation with massage therapy, including slower respiration, deeper sleep, and/or reduced requests for repositioning.

It can be tempting to view care plans as “busy work.” But they are actually an opportunity to be mindful of the impact of massage on our clients and to educate others on the care team. We wish you luck and hope you’ll share the words you come up with to describe and measure the impact of your important work!

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2. Schedule an early arrival if you can. This will allow you to be more relaxed and will give you a cushion in the event of a cancelled or delayed flight.

3. There are three lodging options within half a mile of the training center. We are happy to provide information for all three. Students with cars are always eager to assist their classmates; we put everyone in touch prior to class to facilitate these arrangements.

4. We don’t expect anyone flying on an airplane to bring a massage table! But we do ask that all students bring sheets, towels, and pillows (see list of Things to Bring). Students typically borrow these from their hotel room.

5. We also ask that students bring unscented lotion or cream. A 3.5 travel-size container of lubricant will be plenty for this class.

6. Protect yourself in crowded spaces with mindful handwashing and use of hand sanitizer. Even if you’ve grown accustomed to not wearing a mask, carry one with you. You could end up seated next to a coughing passenger and wish you had one.

7. Consider trip insurance. For the benefit of your fellow students and the fragile clients we care for, we ask that you not attend class if you are sick. We would hate for anyone to be penalized for doing the right thing.

Registration Info

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Then… why is receiving payment for the work you love sometimes challenging? Many of us struggle to find our way into a hospice setting. It took Cindy and I quite some time to find our place in the world of hospice massage. Cindy currently works as an employee for an inpatient hospice facility, and I contract with a local hospice agency.

There are a few reasons it can be a challenge:

• In many cases, massage is not covered by insurance or Medicare. This means the agency must value our service enough to pay for it directly. Since our services are not reimbursed, some agencies struggle to justify the expense.

• There is a lack of education in the medical field and the decision makers at agencies.

What’s a skilled massage therapist to do?

Be Prepared:  A recent article found that fewer than 1% of all massage therapists in the US are trained to provide end-

of-life care. Continue honing your skills so that when the call comes, you’re ready. Network with other therapists who are doing the work to get insight on their success.

Be Persistent:  Don’t give up. You know the old saying, “the squeaky wheel gets oiled first”. Continue to reach out to hospices, hospitals, palliative care agencies, and skilled nursing facilities in your area to let them know about your training and service. Offer to educate their staff through presentations or workshops.

Be Patient:  If it’s truly your heart’s desire, stay focused and wait for the right opportunity. Don’t give up your current work until you find your way into hospice massage. It may come a little at a time. The good news is there are agencies and medical personnel who recognize the value massage therapy has for their patients.  Some have received funding through grants or other means.

Also in our favor is the concept of palliative care is gaining momentum, with an increasing number of providers looking to expand their services to meet growing demand. We have an important role to play in the growing field of comfort care.

Be Prepared, Be Persistent, Be Patient

Written by Susan Gee

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Several days into a recent vacation, I realized I had no back pain. One day after returning to work, my back hurt again. I think it’s clear that my work is to blame.

Massage therapy students receive a lot of information during massage school about working ergonomically. But this learning doesn’t apply when our clients are in recliners or hospital beds rather than on a massage table. I thought I had made the adjustments needed to protect my body at the bedside. But now I realize I need to do more.

It was Irene Smith who enlightened me that propping is not just for the patient. Focusing on patient comfort to the exclusion of our own is not a sustainable way to work. I’ve also observed that empathic patients are keenly aware of whether we are comfortable. Their concern about us can keep them from fully relaxing.

So I’ve spent the past week paying more attention. Here are a few insights.

• Though I was raising the hospital bed while standing, I was not raising it high enough. The ideal height is for the patient to be level with the therapist’s waist, or belly button.

• When working in a seated position, the bed should also be raised (or lowered) to the height of the therapist’s waist or belly button

• The therapist’s hips should be pointed toward the working hands, to avoid twisting from the waist.

• The patient’s body should be as close to the therapist’s hands as possible in order to avoid reaching. This is fairly easy when the therapist is standing. 

 Patient at the height of the therapist’s waist and hips pointed toward working hands creates nice spinal alignment for the therapist.

• When working in a seated position, a pillow can be used to bridge the distance between the therapist and patient, as pictured in the top photo. Part of the pillow sits in the therapist’s lap, giving the therapist’s arms something to rest on. The folded green towel under the patient’s right shoulder was added to fill space. No leaning, no back strain.

• Remember to return the patient’s bed to the lowest position if it has been moved for massage.

When both patient and therapist are propped for comfort, there is likely to be a greater sense of ease in the moment. I am eager to experiment with these small changes, hoping they can make a big difference.

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