I began working in hospice care in 2002. My first client, Carol, wanted to decrease the swelling in her legs so she could go out for her birthday.
I quickly learned that this client did not need a typical massage.
I saw Carol once per week. She sat in her wheelchair, and I would do very light touch from her foot to above her knee. As the weeks passed, the hospice staff and I noticed her swelling had lessoned. I had learned a lot during this time, but I realized that there were many more pieces to massaging hospice clients than I had originally thought.
Carol started me on my career and my love with hospice. She is one of the reasons I pursued a career in hospice for the past 14 years. Carol was a woman who asked me questions during every session—questions like, “Why won’t God take me?” She asked this particular question on the day that her friend died.
The Hospice Care Model
A person has to meet certain qualifications to be admitted into hospice. This criteria is created and managed by Medicare and insurance. When the criteria are met, services can then be received from a hospice company or nonprofit. (Self-pay is also an option.)
The main criterion is, “Could this person die within six months or less?” When the answer is yes, they will most likely be admitted. However, rules and regulations can change. According to the American Hospice Foundation, some common diagnoses that qualify clients for hospice include cancer, such neurological conditions as Parkinson’s disease, stroke, Alzheimer’s disease, dementia, diabetes, heart failure, chronic lung problems, kidney disease, AIDS and organ failure.
Possible reasons families and clients choose hospice include the opportunity for a person to die on their own terms, to be able to stay in their own homes with loved ones, and to die with limited intervention including no tubes, IVs or machines.
Hospice care might take place in the home, or it might occur in a hospital, nursing home or hospice facility.
Hospice is comfort care, not curative care. A person, or their family, chooses hospice because they would like to have choices in their death and their experiences. In choosing hospice they are able to have a say in the way they exit this existence. The client can stay in their home or the location of their choice.
The Role of Massage
By the time a person reaches hospice they may have been through a lot of medical procedures—and not always pleasant ones. Touch is our instinctive form of communication. One of the benefits of our job as massage therapists is that we get to be the person who can provide a nurturing touch to a body that possibly hasn’t been nurtured for some time.
Massage lowers blood pressure; stabilizes heart rate; stimulates the release of endorphins, the body’s natural pain suppressors; creates a feeling of being safe and cared for; can help the hospice client get more in touch with their body, which can assist with the dying process; and can help ease such emotional symptoms as anxiety, depression and fear, which supports the client in receiving better care from all disciplines.
Here are some general guidelines for hospice massage:
- Hospice massage comprises a light, therapeutic, comforting touch. Rarely will you apply deep pressure.
- Be aware of the client’s response to the massage and your pressure via verbal and nonverbal cues. The hospice massage session is no longer than 30 minutes (or less, depending on the client).
- Use unscented lotion or cream that absorbs well and will not pull on the skin, as most hospice clients have fragile skin that can tear easily. Choose a lotion with a nice glide. Scents can overwhelm a person in hospice care. Unless requested, use an unscented lubricant.
- Range of motion work is an important part of hospice massage and is suggested as long as that arm or leg has movement.
- Non-touch techniques, such as Reiki, can be supportive when the client does not want to be touched.
- Working over and around clothing is common.
- Contraindications to massage include skin issues such as wounds, rashes or infections. If any of these are present, skip that area. You can ask the staff or the caregiver about these areas of concern.
Communicate for Client Care
Communication is key between you, the family and the hospice. It is best to have the contact information of the RN, who is the case manager, and the social worker for your client. In most cases, you will report your visits to the RN and receive updates on the client from either the social worker or the RN.
I encourage you to find out when the client’s weekly team meeting takes place and contact the social worker or RN for an update following each meeting. Touch base with either of these health care professionals before your visit to confirm that the client can receive massage.
If massage therapy is a new addition to the hospice you are working for, the staff might not be used to keeping a massage therapist up to date. If you are working privately for a family, you must obtain permission from the family to speak with the hospice.
Your communication should include active listening, or listening with full attention, whether you are with the client or a family member. When you are with your client or a family member, all that matters at that moment is that person and the conversation. Giving your full attention to what they are saying can add so much to their day.
As a person who steps into hospice, you are stepping into the middle of a person’s life. You will be there for a short time and then step out again. It is ideal to remember that this person has a past and a future, and that where they are right now involves you. Meeting the client and the family exactly at this moment is a piece of the therapy hospice care provides.
For example, if you walk into a room and the client is sad, meet them in their sadness. Support them by asking what they need. If they don’t want to be happy, do not try to make them happy. Ask them what you can do for them. They just might want someone to be with them.
This person is on a journey, and they have chosen you to accompany them. One of the biggest services we can give clients is a therapeutic presence.
Dementia and Alzheimer’s Disease Clients
According to the Alzheimer’s Association, there are currently more than 5 million Americans living with Alzheimer’s disease. Many of them could end their lives in hospice care.
Some common situations you might encounter when caring for clients with memory challenges include not knowing who or where they are, asking questions multiple times, and suddenly getting upset or laughing and not knowing why.
When you work with a client who has a diagnosis of dementia or Alzheimer’s disease, there are certain steps you will want to take each time you visit them.
For example, to avoid causing any anxiety in the client, greet them where they can see you clearly rather than coming up behind them. Greet them before you touch them.
Introduce yourself, remembering that they most likely do not remember who you are. You might be a stranger to them every time they meet you, so treat each session like it is the first.
Ask permission to touch the client. Explain what you are going to do and ask, “Can I rub your hands?” or “Can I rub your shoulders?” Give them the power to choose. Offer slow, gentle movements.
Connect with the Alzheimer’s disease and dementia client by making small talk. Ask them questions about their past, if they were married, how they met their loved one and how many children they have. (Use the photographs around the room to get clues.) The past is usually something that they remember. Most Alzheimer’s clients, for example, do not remember what they had for their last meal but can remember where they went on their honeymoon.
Ask if they are having any pain. This with help you know where to massage and to document their pain level. (However, even this will be challenging with some clients. According to Edward Cisek, PhD, a research associate with Bon Secours Center for Research in Geriatric Care, in an article written for the American Hospice Foundation, “As individuals reach the moderate and severe stages of Alzheimer’s and other dementias, their ability to communicate their needs with language, including the need for pain relief, is lost.”)
Remember to meet the client where they are at that moment. If it is not a good day, you might need to come back at a different time. If the client becomes agitated during the session, you might need to end it early. Being flexible with how the session goes is something that will make your visits easier.
When working with a hospice client, there is almost always family involved. You might find yourself in a home that isn’t what you would consider a home or feel that you disagree with how the family interacts. Remember, you are stepping into a family that is under a new level of stress. If you see something that causes you real alarm, you can report it to the social worker.
As someone outside the staff and family, you are an extra set of eyes. Being an advocate for the client is one way you can raise the level of care you can give to that person. You can be the voice for a client who does not have one.
For example, you can make sure the client has water and the ability to reach it when they are thirsty. If the client is soiled, get a staff member to change them before you begin the massage. If they are cold, get another blanket or adjust the room temperature. When a person is in a care facility, the staff usually does not have the ability to be with that person 100 percent of the time, so you can be their advocate while you are there.
A Caring Specialty
The elder population in the U.S. is growing: An average of 10,000 people turn 65 every day. By the year 2030, 18 percent of the population will be at least that age, according to the Pew Research Center. Use of hospice care is growing as well. In 2015, for example, almost 96 million days of hospice care were paid for by Medicare, according to the National Hospice and Palliative Care Organization’s Facts & Figures: Hospice Care in America, 2016 Edition.
Working in hospice can comprise volunteering a few hours a month, becoming a paid staff member, or writing and teaching on this specialty.
Your caring touch is needed to help ease the journey from this lifetime to whatever comes next, a journey that every one of us will make someday.
About the Author
Elizabeth Munson Erbrecht, LMT, has worked with hospice clients and patients for 15 years. She has held multiple positions, including volunteer, volunteer coordinator, massage therapist and spiritual care coordinator. She has built and implemented massage therapy programs at three different hospices. She is a National Certification Board for Therapeutic Massage & Bodywork-approved continuing education provider, teaching hospice massage.