Due to the increasing number of hospice organizations in the United States and the current demand for complementary therapies in mainstream health care, the field of hospice massage has come into its own and is receiving long overdue attention. Massage is becoming the most requested integrative therapy in hospice and palliative care, but with this growth also come some growing pains.
Born in Volunteerism—To Our Detriment?
For two decades, hospice massage was considered strictly a volunteer offering. Those serving in this field were praised more for their spiritual practice than for their professional skill.
My identity, too, has been steeped in volunteerism. I am still praised for my volunteer service during the pioneering of this field in the early ’80s and ’90s. Although deeply honored to serve in this way, and profoundly honored with this recognition, I continue to be thought of as a massage volunteer within the community.
The concept of “once a volunteer, always a volunteer” is one of the challenges that held the hospice massage field back from its due professional recognition for so many years. This field was born in volunteerism and it has been hard to cultivate a professional image for hospice massage within the industry.
Throughout the ’80s and ’90s, hospices all over the country developed massage volunteer programs. Then, in the late 1990s, two very important changes happened. First, massage licensing laws started to change. The number of hours required to be certified as a massage practitioner was increased, making education more expensive. A massage certification became more difficult to acquire. At the same time, however, massage was becoming more accepted within the public mainstream. Being a massage therapist became a viable professional option, and those supporting a family as a massage therapist seemed to be less likely to be able to volunteer with their already significant investment of time and resources to their profession.
Secondly, corporate health care began to soar in the late 1990s, and privately run hospice organizations all across the United States became part of larger corporate identities. Hospice volunteer protocols started to change, making licensing of hands-on practitioners mandatory. This required many of the hospice massage volunteer programs to cultivate other models for offering massage (see box on page 67) as an integrative therapy to their clients.
The Challenges Affecting Us Today
With the cultivation of various massage program models, and the mainstream corporate demand for the service putting practitioners in all types of health-care settings, the knowledge of what an MT needs in the way of education and support for this work is not clearly understood by the hospice organizations, the educational institutions, or the practitioners themselves. The health and integrity of the field of hospice massage is beginning to suffer, as well-defined challenges begin to appear.
Health-Care Organizations
Practitioners, excited to serve in this newly recognized professional option within the massage industry, may not have sufficient training to work with dying persons. These practitioners are being hired by program coordinators who may also have little to no knowledge of what training a hospice massage practitioner needs, or what is needed in terms of support to facilitate a safe massage program for both the client and the practitioner within the hospice dynamic.
I am aware of hospice programs hiring massage practitioners who have no training in modifications from working with healthy people on a massage table to working with seriously ill people in beds.
It’s important for these program administrators to understand that hospice massage does not look like Swedish massage learned in massage school. Maureen Short, LMT, employed by a Massachusetts hospice, says, “Touching a dying person requires a completely different set of skills than touching/massaging an average healthy person. Initially, I was quite unaware of this.”
Yes, there are courses for special massage populations, but rarely do health-care organizations understand that massage modifications are needed. Why are they unaware? Sadly, many hospice organizations offer massage therapy because it is a competitive modality of care. It markets well. Hospice clients want it. Their families want it. Therefore, the service may be offered with little or no concept of what the work actually demands from the practitioner in terms of skill modifications, emotional impact, and support.
This lack of understanding is currently reflected in practitioners who are given the names of 70, 80, or 100 hospice clients on a referral list. Time allotted for each client may be as limited as 35 minutes, including reporting. This in itself illustrates that the important work required before a session even begins—having onsite communication with caregivers and family members, setting up a comfortable and safe space for a session, and incorporating various levels of nonverbal communication with a client with dementia or who is too fragile to speak—is not understood by many of the organizations who are hiring.
This overload of clients also shows a lack of understanding of the emotional impact of this field. A practitioner with even just 50 clients on their referral list will never make it to see them all before they die. The few who might will not make it back a second time. This is an intimate field. Not seeing those clients on your list instills guilt and burnout just from knowing you didn’t have the time to see them.
When you touch a hospice client, an actual physical and emotional bond is created—a connection is made. To bond in this way, over and over again, and not get back before someone dies, does not allow the practitioner to fulfill the need for relationship. Nor does it allow the practitioner to acknowledge the bond, and grieve the loss. Yes, clients dying constantly after one session causes anxiety and feelings of being unfulfilled. This is part of the emotional overload in the current model.
This model of referral overload is thriving because the practitioners are excited with the employment and the number of clients, and because they do not have other models from which to navigate. Students come to me from across the country recognizing the organization’s lack of understanding for what they do and knowing they need support. Others are afraid to acknowledge they’re overwhelmed because they are just excited to be making a good living in their chosen field. About 90 percent of those who come to me for continuing education in hospice massage acknowledge they have not had the basic skills they need to provide this service. Short reiterates the point: “I was not prepared to massage dying persons with the education I received from my hospice, nor did my massage education include it in the curriculum.”
Massage Institutions
The challenges created by the hospice organizations are compounded by a large portion of the massage educational institutions not recognizing that hospice massage is a designated field apart from geriatric or oncology massage. Many times, at the end of these courses, the unwell or dying person will be addressed in the curriculum. This may be a four-hour opportunity for the student to hear about hospice care. A hospice massage practitioner may come and speak about the service, define the need for massage and the positive outcomes for dying persons, and present anecdotal information on what massaging a dying person is like. This segment may be extremely inspiring and informative about hospice, but not informative enough to guide you in the process of modifying or adapting massage for dying persons.
Meeting a client at the last stage of their life is a complete field requiring adaptations to every aspect of a massage practitioner’s skill base. Communication skills are also a primary component of this work. With core curriculums full to the brim with required courses, continuing education in hospice massage seems to be the answer. However it finds its way into the mainstream of massage education, it’s time to have it appear as a viable educational opportunity.
As the result of working in hospice massage for 35 years, and having taught hospice massage for more than 30 years, I have witnessed the full spectrum of growth of this field. The challenges that practitioners, organizations, and schools are faced with at this time are injuring the integrity of this invaluable and rapidly growing field of massage.
We must remember that massage has been introduced into a mainstream medical paradigm that is unhealthy. This is a place where health-care providers are not supported and suffer from immense burnout and compassion fatigue, and where nursing assistants who facilitate the majority of care provided at the bedside, as compassionate as they are, many times have not been given the skills or the support needed to provide quality care for fragile beings.
We have to do better if we are going to bring touch into the medical model. Touch is the integrative thread that weaves together the physical, psychological, and spiritual aspects of care to create the essence of comfort care. Isn’t this why massage was introduced into hospice care in the first place? Wasn’t it introduced to bring tenderness, connection, and respect to the bedside of the dying?
These intentions first have to be exhibited within the foundation of the field itself. Otherwise, hospice massage will simply become part of the current unhealthy medical model.
Solutions
One of the primary principles of the hospice model is the team approach, and it will take a team approach to restore and retain the health of the hospice massage field. Each component of this team needs to be educated as to what is needed to retain the health and support the health of the hospice massage dynamic as a whole. All parts must work together.
Educational Institutions
There are two ways the schools can support the hospice massage field.
1. Find teachers who have been in the hospice massage field and add a one-day hospice massage class to core curriculum with resources for the students to obtain further education. In this one-day course, the school can educate the practitioner about issues requiring further study and give supportive resources for follow-up. Students need to know what they do not know.
Basic hospice massage educational needs for an introductory practitioner are:
• Standard precautions for hands-on care
• Physical stages of dying and common behaviors
and symptoms of each stage
• Personal death awareness; includes belief systems
and personal feelings and experiences related to death and dying
• Modifications of massage techniques for a client’s physical and emotional vulnerability
• Practitioner body mechanics for providing a massage
in a bed and a chair
• Nonverbal communication skills
• Knowing how to enter and exit a client’s room or home
• Knowing how to communicate with family, friends, and team members
• Knowing how to provide a massage in a bed and a chair, including positioning a client with props
Each one of these components has several levels of learning. However, just educating the practitioner as
to what they’re missing in this knowledge base is the first step.
2. Schedule a one- or two-day CE hospice massage course at least two times a year, with the teacher being someone who has provided the service for at least two years. In the past five years, there seems to be a growing number of practitioners in this field offering training courses. I believe that with a bit of research, an appropriate educator can be found.
Hospice Organizations
The best-run hospice massage programs seem to be those coordinated by someone who has performed the service. In many instances, however, the program may be coordinated by someone in social services or an administrator with no massage background.
If a hospice organization hires a massage coordinator who does not have hospice massage experience, then a responsible first step toward setting a healthy foundation is to educate that coordinator. This might be as simple as developing a hospice massage resource list that can be included in their hiring materials. This list will include webinars, live courses, articles, and at least one other organization that has a hospice massage coordinator to use as a resource. This networking is vital for the new coordinator and the foundation of the program.
Hospice massage program coordinators should develop an application form as a first step toward screening qualified applicants. This can save significant time and effort in the interview process. In addition to asking about professional credentials and insurance, ask about the practitioner’s education in adapting massage techniques to specialized populations. List the educational needs (see page 69) and give them a box to check their appropriate training. What if the majority of applicants do not have specialized training? Then train them, or direct them to a coordinator who can.
In San Francisco, a few hospice organizations send applicants to me for training before they refer clients to them. Both hospices are private contractor models. The coordinators don’t really understand all that the practitioners need; however, they know I do.
Supporting the Work
Whether the program model is employee-based or a private contractor model, support is primary to its health. In addition to needing support for the actual massage session, practitioners who provide this work are impacted by it. They need a place to share the total sum of the experience.
An employee model may offer various methods of support. Short describes her employer’s support: “The hospice team is highly supportive. There are two RNs overseeing patient care in an administrative capacity. Both are supportive and responsive. The director of hospice is readily available for questions and concerns. Weekly team meetings are conducted on Monday mornings to review weekend business, connect, and address questions and concerns. Interdisciplinary meetings are held on a biweekly basis with MDs to review facility and community patients.”
With many of the clients I have served, team meetings have been available for me to attend. I have always found this to be a deeply integral component to my support. Here are some other ways to support practitioners:
• Schedule a monthly or quarterly conference call that gives the opportunity for massage employees to communicate with the coordinator and share with the other practitioners.
• Develop one specific contact to report to by email or phone if challenges arise between specific report dates. This might be the nurse or the caseworker for that specific client, or the coordinator of the massage program.
• In-service trainings serve as support, in addition to serving the intention of education. Practitioners have the opportunity to meet each other and share contact information, as well as learn and review skills. These may be scheduled two or three times a year.
• I find that as a private contractor, my reports serve as a portion of the support I need. I report my comforts and discomforts. This is also the place I advocate for adding or changing care strategies for my clients.
Aside from structured support measures provided by the referral organization, spending time with and getting to know the staff and families during massage sessions can be comforting and informative. This type of networking is vital to a private contractor’s support.
Practitioners Need to Own It
As a hospice massage practitioner, education and training are the primary foundation for a healthy practice. Seek out articles, consultations, and live training in adapting your current massage skills to those who are in end-of-life care. Educate yourself about hospice care and what symptoms are prevalent to the stages of the dying process. The online resources are vast in the field of death and dying.
Develop interview questions for the organization you target. You need to ask questions: Does this organization provide a hospice orientation and overview? Do they provide in-house hospice massage training, and if so, what does it include? Would they support reimbursement for your clinical skill development? What type of referral system do they have? Is there a support contact?
When you ask questions, you become an educator. You let the organization know what you need. Many organizations don’t know what you need until you ask.
Choose your contracting agency wisely. Choose one that asks you if you have skills adaptive to hospice patients, has a clearly stated referral process, assigns no more than 40 referrals, and that will support you and what you do.
Your Challenge
I am profoundly aware of the value of massage in hospice care. Our service is much greater than the physical body we are touching. Our service teaches families strategies for staying connected and ways of reestablishing intimate contact when despair and hopelessness may have them standing at a distance. Our service brings hope to the health-care team that has no cure but sees relief, comfort, a relaxed face, less anxiety, or easier breath with their patients. This, in itself, connects and nourishes everyone surrounding the patient.
Massage in hospice care is a practice of returning respect and dignity to the dying. These intentions cannot be cultivated within an unsafe foundation. As a school owner, it’s time to provide the education practitioners need to enter into this groundbreaking field with confidence. For hospice organizations, it’s time to educate your coordinators in order to create a strong, healthy, and safe massage program for practitioners, as well as patients. And practitioners, it’s time to access the education you need to cultivate a nurturing and long-lasting practice. Own the depth of your value in this field. The one-on-one tenderness, communication, and respect you model educates those around the patient to the more human aspects of care for the dying.
With everyone working together, hospice massage can continue to model that touch is the missing link in health care.
The Models for Massage in Hospice
Models for massage therapy programs in hospice care vary, but there are three primary models:
1. Massage practitioners are hired as employees.
2. Massage practitioners are private contractors and are called at random and are paid by the clients.
3. Massage practitioners are private contractors and are paid through a fund or grant by their sponsoring hospice organization.
Resources
Information on hospice care: www.hospicenet.org
Stages of dying and patient behaviors and symptoms:
Gone From My Sight by Barbara Karnes; www.bkbooks.com
Massage in hospice care training and resources:
www.everflowing.org
Irene Smith, certified in massage since 1974, is a member of NAMT, CAMTC, and the Hospice Volunteer Association. She is an NCBTMB provider, a member of the advisory council for the Elisabeth Kübler-Ross Foundation, and an internationally respected author and educator. For her work introducing massage into hospice care on the West Coast in 1982, Smith received the World Massage Festival Lifetime Achievement award. As the founder of Everflowing, an educational outreach project dedicated to teaching touch awareness and massage as invaluable skills in caring for those in later life stages, Smith continues to teach live and online courses, create resource materials, and consult in the development of massage programs in hospice care. For information on training programs and resource materials, visit www.everflowing.org.