By Lizzy Miles

Before I was a hospice social worker, I was a volunteer. I was so nervous to visit my first patient. Over time, I became more comfortable. Through the course of switching careers from volunteer to social worker, I attended volunteer training at several organizations. There is a lot of really good information provided, but sometimes hospice staff forget what it’s like to be NEW. These are the questions I had when I first started. Once I gained experience, and went to school for further training, I decided it might be helpful to write out the answers for others who are just embarking on their hospice journey. It is rewarding.

Q: How do I start the conversation?
If you are meeting a patient for the first time it may be helpful to speak with the volunteer coordinator to get some helpful information about the patient. Introduce yourself and explain who you are and why you are there. If this is not possible, then it may be helpful to start by checking in with the patient, “How are you feeling?” Ask them about their comfort level and possibly “Do you have any pain?” Ask them about their family, interests, and if they would like to share anything. A good conversation starter and question is “tell me about…. cars, when you were young, a time when you were happy?”

Other tips:
•  Talk about weather, news, or something that is going on currently. It’s probably best to stay away from politics, but if patient wants to talk about it, you can listen.
•  Silence is okay, give them time to think. Avoid rapid fire questions as they will confuse and be hard to understand.
•  Look around the room for cues of things to talk about: pictures, decorations, religious artifacts, figurines.
•  You can comment on people in pictures, but keep in mind, if patient has dementia, they may be distressed by not being able to identify who it is. So you can remark on their expression. “She looks happy!”
•  Make this time about them.  Redirect back to them if they ask you too many questions about yourself.
•  Be patient. It takes time to build a relationship.
•  Listen and observe their body language.

Q: Why do I need to ask permission?
Hospice philosophy emphasizes patient-centered care. Hospice patients and families can feel like they have no control over the situation they are in.  By asking permission before you sit or start a visit, you are giving them a sense of control. As a volunteer you want to show respect for patients and make them as comfortable as possible. When you ask permission, they know they have the option to say NO, or refuse your visit. In addition, being courteous and respectful helps to open up the conversation and ensure the patient is willing to meet today.

Q: What do I do if they are sleeping?
If a patient is sleeping you can wake them if you are only there to see this patient and do not want to waste a visit. They can always send you away if they do not want to visit. You will learn by their reaction the first time you try to wake them whether it is a good idea.

Sometimes all you have to do is sit down next to the patient and they hear you and wake up on their own.

The best way to wake a patient is to call their name at a slightly raised voice. If this does not work, then proceed to touch their forearm or hand just above the wrist, and call their name again. If after several attempts to wake the patient they do not wake, whether you stay in the room or leave will depend on the plan of care you’ve been given and the purpose of your visit. Your volunteer coordinator may be able to offer suggestions regarding the best time of day to visit.

Other tips:
Facility patients: If you have other patients in the facility, then go and see them first and then return to this patient.
Home patients: The caregiver can give you guidance as to whether to wake the patient.

Q: What do I say when they ask me about myself?
If you feel comfortable answering the question and sharing about yourself then that is okay. Be aware that some information should not be shared and the visit is for the patient. The patient has enough to worry about with their own life without worrying about us, so we should keep our sharing on a positive note. One should share information if it will help to strengthen the relationship and build rapport with the patient. If you do not feel comfortable with a question simply tell them so. Sometimes patients will ask your opinion on things. You can redirect back to them by saying, “I’m not sure. What do you think?”

Q: What do I say if the patient asks me, “Why am I still here?”
It is not uncommon for patients at the end of life to have existential questions. They do not really expect you to have an answer to this. A simple way to respond to these type of questions would be to provide a reflective statement. “You’re wondering why you’re still here.”

Q: What do I do if family is there? (Facility)
Introduce yourself as a hospice volunteer. Ask if the family member(s) would like you to join them with visiting the patient or if they want time alone. Their visit takes priority, so never let them feel they need to leave so you can visit. However, sometimes family members will use the arrival of a volunteer to allow themselves to leave. You will have to read the situation.

Q: What do I do if they ask me to leave?
Say “Thank you for your time” and leave. It is important to remember that this is their home whether in the community or in a facility. As a volunteer we should respect their wishes and their desire for privacy. If the situation allows, ask if you can return some other time to visit with them.

Q: What if I have to leave and they won’t stop talking?
The best way to handle a talkative patient is to start “leave-taking” behavior before you actually need to leave. Leave-taking behavior is the non-verbal actions that someone does when they are about to leave a room. If you do them slowly, the patient will understand your visit time is coming to an end. Behaviors can include putting on a coat, gathering your things or shifting forward in your chair. When you have the opportunity to say something, you can tell the patient “I have to leave in 5 mins.” Another way of saying this is “I’m sorry, I have to get going and I had a wonderful time with you today. I hope we can continue our conversation next time we visit.”

As you get to know the patient, you will learn how much time in advance that you need to start the leave-taking. If you are scheduled as a regular volunteer with the patient, you can tell them that you will continue the conversation the next time and that you look forward to hearing more about xyz.  If they ask when your next visit will be, you may tell them an answer if you know (i.e. next week, in a few days).

Q: What does it mean to “be present”?
When we are with a hospice patient or family member, we want to be completely there, both physically and mentally. Turn off your cell phone and put it away. Disregard what has happened on your way to see the patient and do not think about what is happening after the patient. Give 100% to the patient and what their needs are at this moment.

Q: What do I do if they want to give me something?
Hospice patients and families are considered to be “vulnerable populations.” It is not uncommon that they may feel indebted for the time that you are spending them. Gracefully decline all gifts, as it is hospice policy. Assure them that knowing them is a gift in itself. If they want to do “something” you can tell them to write a thank you letter to the hospice, or tell their friends and family about their positive hospice experience.

Q: What if I want to give the patient or family something?
Remember, that for most patients, they are learning to “let go” of the material world. Patients at the end of life have a greater appreciation for the intangible gifts such as your time and presence. Do not underestimate the value of what you do.

Ask the volunteer coordinator if you have something in mind that you want to give the patient. It may be acceptable to give a small item such as a flower, but beware of the power of reciprocity. By giving gifts you could create a greater feeling of imbalance. Food items can be tricky for multiple reasons. Family members may have a different idea of what the patient should be eating, or the patient could have a medical condition that affects their swallowing or digestive capabilities.

Q: What do I do or say if the patient or family member starts crying?
Allow the tears to flow. Don’t be uncomfortable with the tears and do not rush to offer a tissue unless they appear to be looking for one. (Try to read their body language.) You don’t have to say anything, but if they seem like they want to talk about it, you can say something like, “It seems like I may have said something that has stirred up some emotions. Would you like to talk about whatever is going on?”

Q: What do I do if they say they are in pain?
Hospice nurses are specialists in pain control and so this is not likely to be a frequent occurrence, but it could happen. If the patient is in a facility, you can press the call button or ask the patient if they want you to find a nurse. Sometimes a patient may describe pain but then tell you they do not want you to call a nurse. If a patient is at home, notify the patient’s caregiver of their pain report. In the meantime, you can ask if there is anything you can do to make them more comfortable (i.e. adjust their pillow or blankets, hold their hand).

Q: What to do if they fall?
Do not move them!! Ask if they are okay. If in a facility go and get a nurse or notify a staff member that the patient needs assistance. If at a home notify a family member and call the hospice nurse or volunteer coordinator. As a volunteer we are not trained to assess a fallen patient or assist in transferring them safely so it is best to leave it to those who are familiar with the process.

Q: What to do if they complain about a facility?
There are some things about our lives that we can change and some things we cannot. Sometimes patients just need to vent. It’s important to remember that we cannot necessarily “fix” every situation. Your primary role is to let the patient feel they are being heard. You may also ask them if they have raised their concerns with the facility. If they haven’t, then encourage them to share their concern with the appropriate department.

Some questions or complaints are resolvable “I don’t know when dinner is.”

Do not get involved in trying to resolve an issue, unless it is an immediate need that you can support by finding someone, “I pressed the call button 20 minutes ago and they still haven’t come.”  You may be able to walk to nurse’s station and relay the patient’s need.   Talk with your volunteer coordinator if you have questions or concerns related to information the patient tells you.

Depending on the nature of the complaint, you may also be able to reframe or redirect.

When you reframe, you are helping the patient look at the situation in a new light. For example, if they are talking about the food being bad then say something like “you were telling me the other day how much you loved the tapioca pudding.”

To redirect a patient, you might say something like, “it’s not the same as home-cooked meals. What were some of your favorite foods to make?”

Always remember you are not in this alone.  The volunteer coordinator is just a phone call away for any questions or concerns that you have.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW