Volunteering in Non-Medical Palliative Care

The recorded video is available in English and Russian on our YouTube channel. Alternatively, you can find a summary of the webinar below.

History and Background

Palliative care and the volunteer movement within it are relatively young phenomena. Hospices, as we know them today, emerged about 50 years ago thanks to nurse and social worker Cicely Saunders. She defined the core concept of palliative care — "total pain" — which encompasses physical, emotional, social, and spiritual pain.

Palliative care is avant-garde in medicine, bringing together the most dedicated specialists and creating new methods and tools capable of positively impacting all aspects of total pain.

Volunteer work became part of palliative care quite recently. It's a resource that requires careful attention and understanding; it can become a reliable tool for addressing non-medical challenges in palliative care.

What Can Volunteers Do?

The assistance of volunteers in addressing non-medical tasks in palliative care can significantly improve the quality of patients' lives, alleviating worries and concerns in legal, social, and spiritual matters.

Assisting patients with dental appointments or taking walks holds no less importance than effective pain management and other medical support.

Legal Foundations

  • Before embarking on the organization of volunteer activities in a hospice, it is crucial to clarify the legal basis for such work.

Start with the critical point — whether a law in your country regulates charitable activities and volunteering. A state-level regulatory framework helps define the overall direction and fundamental principles to adhere to when organizing a volunteer project.

  • Next, carefully examine the documents that regulate the specific hospice's activities and understand whether they include the possibility of involving volunteers in addressing non-medical tasks for patients. Often more is required than the need for medical staff alone; it's essential to convince the hospice management of the necessity to incorporate such a possibility into the institution's regulatory documents.
  • The next step involves establishing the legal grounds for involving volunteers in hospice work — contracts with volunteers or NGOs that organize volunteer assistance. Volunteering is a voluntary action that must be adequately documented to define each party's responsibilities clearly.
  • It's important to precisely outline the list of required medical certificates for volunteers. Working with people with compromised health requires special responsibility - it's important not to introduce any additional viral or other hazards that could be dangerous for them.

Understanding Volunteers

  • A volunteer comes to assist, not to do someone else's work. There is often a misconception that volunteers can be assigned routine tasks, but that's not the case. A volunteer is an assistant to a staff member, not a temporary replacement.
  • Volunteers help for free and selflessly. It's an internal need that arises in each individual for personal reasons; the motivations of volunteers are diverse.
  • Volunteers have their own lives, including family, work, and hobbies. Remembering this and understanding that volunteering is an additional activity, demanding a volunteer's constant involvement in hospice tasks is not feasible.
  • A volunteer comes to help in their free time. This should be considered when assigning tasks and determining the volunteer's scope.

Interactive Session: Where Volunteers Can Help

Moldova (Victoria) — NGO organizing volunteer assistance at home and in a daycare centre.

We invite volunteers from medical colleges to clean apartments and purchase groceries and medications. In schools, we organized collections of gifts, fruits, books, and letters for children with cancer. A transportation company provided its services free of charge to deliver gifts to these children. In Moldova, there is a law on charitable and volunteer activities, which has quite a few requirements, and that's why only some people take on systematic work with volunteers — it's challenging to meet all the legal needs.

Belarus (Sofia) — children's hospice, volunteer coordinator.

We actively involve volunteers in the "Stork" summer camp: each child is assigned a volunteer who provides support for two weeks. Running the camp is only possible with volunteers - it's a significant volunteer project. We had experience involving schoolchildren in this task — we had an Agreement with parents on a legal basis. We also implement the "Family Friend" project for home assistance — communication and help with specific household matters. Guidelines regulate the work of volunteers within this project. Charity events where volunteers participate are important in drawing attention and resources to patient issues. We always provide training for volunteers — we educate them about necessary skills, emphasizing the specifics of the work. There is no law on charitable and volunteer activities in Belarus, so we must develop individual legal solutions for each volunteer project.

Where Can Volunteers Help?

Volunteers are like water — they can fill any gaps and assist in solving various tasks.

Administrative and logistical tasks — taking care of plants and gardens, cleaning, minor repairs, filling out paperwork, labelling, organizing and categorizing documents, etc.

Working with patients and their families (communication) — often, the opportunity to talk is needed, and active listening by volunteers can fulfill this task.

Event organization - the chance to attend a concert or create something by hand provides patients with a noticeable positive boost.

Assistance with feeding and hygiene procedures — trust in the volunteer, and their relevant skills for aiding staff is crucial.

There are also less obvious but equally important tasks. For example, you are keeping company with a smoking patient — a volunteer who is a smoker.

Interactive Session: Who Can Become a Volunteer?

Belarus (Sofia) — children's hospice, volunteer coordinator.

Those who have the desire and the opportunity — unfortunately, these often do not coincide. We've had minors and retirees come to us and people who want to share their care. It's important to carefully consider each candidate — an individual approach to selection is crucial.

Moldova (Victoria) is an NGO organizing volunteer assistance at home and in a daycare centre.

Working with various people is important; voluntary contributions can vary greatly. For example, we invited artists to perform for our wards, and they would share their experiences with their colleagues who also wanted to participate. The most crucial aspect of a volunteer is a kind heart and a good soul. Our beneficiaries greatly need the love that such individuals can provide. For instance, a women's club consisting of diplomats' wives from different countries in Moldova organized an ikebana workshop, which was very successful among the beneficiaries of our day centre.

Who Can Become a Volunteer?

Anyone can become a volunteer; the criteria for selection depend entirely on the tasks and preferences of the specific institution organizing such work. Volunteers must understand and embrace their responsibility.

When selecting volunteers, the following characteristics should be considered with caution:

The candidate aims to volunteer to advocate for their views. The candidate cannot keep entrusted personal information confidential. The candidate has recently experienced the loss of a loved one and is still grieving.

How to Select a Volunteer?

Experience in organizing volunteer activities allows for the establishment of the following process for selecting volunteers:

  • Volunteer applications, for example, through a Google Form posted on the organization's website.
  • Recommendations from the volunteer's previous places of work. This aspect may seem complex at the beginning of organizing a volunteer project. Still, the goal is to enable the organization to form an impression of the candidate and make an informed choice.
  • Interviews - a crucial step for aligning perspectives on philosophies, missions, and tasks.
  • Introduction - integrating newcomers into an existing work system, immersing them in the regulations and rules of the specific institution or organization.
  • Probationary period - a time to develop required communications and skills and to become part of the team and the atmosphere.

Interactive Session: How to Find Volunteers?

Belarus (Sofia) — children's hospice, volunteer coordinator.

We have developed a unique system for finding volunteers. Firstly, through our website and the completion of application forms on it. Secondly, through the relatives of our beneficiaries. And thirdly, through word of mouth - a highly effective channel. We also conduct "Lessons of Kindness" in schools - for young children, but the information spreads further through them. We have approached universities through their rectors, informing students about our volunteer projects. It's crucial to promptly and amiably respond to applications received from candidates.

How to Find Volunteers?

Several channels can be highlighted through which interaction can help attract volunteers:

  • Non-profit organizations - involving such organizations allows for tackling significant tasks. While organizing the systematic work of volunteers through them can be complex, they can accomplish large tasks quickly - like cosmetic renovations or garden improvements.
  • Educational institutions effectively spread information broadly; they can handle fundraising tasks and work as a form of "word of mouth."
  • Individuals who have undergone similar experiences represent a valuable resource requiring special attention. Potential candidates need to have already experienced the pain of loss themselves.
  • Social media platforms are effective when using the story format. This helps draw attention to tasks that volunteers can assist with.
  • Mass media provides broad coverage, establishes an institution's reputation, and shapes understanding of its mission and tasks. It also aids in directly attracting volunteers.
  • Corporate social programs can address one-time, substantial tasks and attract resources.
  • Spiritual organizations can offer significant assistance, although it's essential to consider their spiritual mission and align it with the hospice's tasks.

Organization of Work

The most appropriate structure for a volunteer network addressing palliative care tasks appears as follows:

  • The head of the volunteer project oversees general coordination.
  • The deputy head handles legal and administrative matters.
  • The secretary assists in resolving day-to-day administrative tasks.
  • The tutor organizes volunteer training.
  • The team leader coordinates activities within specific thematic areas.
  • Volunteers work on tasks formulated by the team.

Palliative units are often state-funded, and the possibility of integrating a volunteer project within the organization is only sometimes present. At the inception of the hospice volunteer movement, the involvement of volunteers in the work was initiated and carried out by the medically inclined personnel interested in their assistance. However, efforts should be directed toward establishing a structure coordinating the volunteer project's activities within the institution.

Volunteer Training

  • Educating volunteers about the philosophy of palliative care is essential, as individuals without specialized education might need to grasp the intricacies and nuances of the upcoming tasks.
  • The specific rules of a particular hospice will help the volunteer choose the right direction and forms of assistance they can provide.
  • The principles of communication with patients and their relatives in palliative care also have specific characteristics, knowledge of which is necessary for successful volunteer support.
  • Hospice patients require various forms of medical assistance, and knowledge of the basics and rules of working with medical equipment is an essential skill for a volunteer. Understanding how a lift operates or how to adjust a bed's position, as well as whether to engage a wheelchair brake — all of these questions are encountered in volunteer work regularly.

Rules and Case Studies

Rules help simplify the process of volunteer interaction within an institution, giving it the necessary rhythm and direction.

  • Laws establish the overall framework of volunteer activities.
  • Institutional rules provide an understanding of the mission and specifics of a particular organization, list permissible actions, and create a safe and understandable environment for everyone.
  • The volunteer code of conduct shapes the philosophy, goals, and tasks of volunteer work. The formulation of this code should involve the volunteers themselves, allowing them to come to a mutual understanding of concepts and meanings of their work "on the shore."

Parting Ways with Volunteers

The process of parting ways with a volunteer is a normal stage of volunteer activity development within an organization and should be approached accordingly. Two main reasons for parting ways with a volunteer can be identified:

  1. Personal initiative - an individual has depleted his/her resources, for instance. It's worth noting that there's a concept known as the Volunteer Cycle — lasting for three months, a year, or even three years. Only some can consistently work for decades.
  2. Due to rule violations - the immutability of the rules, and adherence to which the candidate agreed upon at the start of joining the volunteer project, must be upheld. Violating the institution's rules unequivocally leads to the termination of the collaboration with the volunteer, regardless of the reasons behind these violations.

Useful Books:

  1. "Volunteers in Hospice and Palliative Care: A Guide for Volunteer Service Managers", Edited by Derek Doyle.
  2. "Getting Started: Guidance and Suggestions for Those Planning to Organize a Hospice or Palliative Care Service."
  3. "Volunteers in Hospice Care: Experience of Organizing Systematic Work with Volunteers" by Charitable Foundation for Hospice Aid "Vera."

Question: What risks should be considered when working with volunteers in a hospice?

Answer: Volunteers are a great help, but they open the hospice to the world — this is good for social life, but it can carry risks from a medical point of view. Unprepared volunteers can harm themselves — not tracking their emotional state, overworking, which can lead to burnout, and also harming the patient — by attempting tasks without the necessary skills.

Q: Can volunteers provide material assistance (money, items, etc.) rather than just their time and skills/knowledge? Is this ethical?

A: I categorize donors and fundraisers as a separate subset of volunteers, and I see nothing unethical about such assistance. However, it's important to remember that an extra pair of hands is often more valuable and needed than money.

Q: How can volunteers be protected from burnout?

A: The volunteer project leader should carefully monitor and limit the workload on volunteers. Sometimes it's necessary to stop and regulate their visits and workload. In their daily lives, volunteers should have time to recover and gather resources for their work. Diversifying the areas of activity for volunteers is beneficial. Holding events for volunteers, organizing psychological support groups, and facilitating groups can also help.

Q: How can volunteers feel like part of the hospice team?

A: Transparency of information and processes, involvement in the common understanding of the situation, areas of activity, and principles of task distribution allow volunteers to feel like part of a more significant cause. Communication with the medical staff is critical, allowing volunteers to understand the importance of their work within the broader context.

Q: What signs may indicate that a volunteer is close to burnout and needs support?

A: It's important to understand that volunteering in a hospice can serve as an escape from one's problems. In this regard, monitoring the amount of time a volunteer spends in the hospice is crucial. If it's excessively high and the volunteer lacks other interests in life, it's a clear signal that special attention is needed from the coordinator/leader of the volunteer project.