Understanding Your Hospice Care Team: A Guide for Patients and Families

Published on May 15, 2024

Updated on May 14, 2024

The end-of-life journey can be challenging and emotional for patients and their loved ones. A dedicated team of professionals provides comfort, support, and holistic care in . Each team member has a unique role, ensuring the patient's physical, emotional, and spiritual needs are met. Let's explore the roles of different hospice team members and how they contribute to your care journey.

Social Worker: A Friend in Your Corner

What They Do: The hospice is like a caring friend who is there for you and your family during this difficult time. They understand what you are going through and want to help you feel better. They can talk to you about your feelings and worries and help you find ways to cope. They can also help you with what you need to do, such as finding a place to stay, paying your bills, or filling out paperwork. They can connect you with others and organizations that can help you, such as doctors, nurses, chaplains, volunteers, or support groups.

Key Questions to Ask Your Hospice

  • How can you help us cope with the emotional challenges we're facing?

You can ask your hospice social worker how they can help you and your family deal with the sadness, anger, fear, or guilt that you may feel. They can listen to you, offer comfort and advice, and suggest ways to express and manage your emotions. They can also help you find meaning and purpose in your life and help you say goodbye to your loved ones.

  • Are there support groups or counseling services available for us?

You can ask your hospice social worker if there are any support groups or counseling services that you and your family can join. Support groups are groups of people who are going through similar situations and can share their experiences and feelings. Counseling services are professional help that can provide you with more guidance and support. Depending on your needs and preferences, your hospice social worker can help you find the best option.

  • Can you us in making decisions about care and other arrangements?

You can ask your hospice social worker to help you make decisions about your care and other arrangements. They can explain to you what your options are, what the benefits and risks are, and what the costs and consequences are. They can also help you communicate your wishes to your family, doctors, and hospice team. They can help you plan for the future, such as making a will, choosing a funeral home, or donating your organs.

  • What community resources are available to us?

You can ask your hospice social worker what community resources are available to you and your family. Community resources are people or organizations that can offer you help or support, such as food banks, transportation services, legal aid, or hospice volunteers. Your hospice social worker can help you find and access these resources and ensure you get the best possible care.

Chaplain: Spiritual Comfort and Connection

What They Do: The is a person who can help you and your loved one feel closer to God or a higher power, whatever that means to you. They respect your beliefs and traditions and do not judge or try to change you. They can pray with you, talk to you about your , and help you contact your church, temple, mosque, or other place of worship. They can also help you cope with any spiritual questions or doubts.

Key Questions to Ask to Ask your Hospice

  • If my loved one is afraid of dying, how can you assist them to overcome their fears?

You can ask the chaplain to help your loved one overcome their fears of dying by offering them hope and reassurance. The chaplain can remind your loved one of the promises of God or a higher power and the love and support of their family and friends. The chaplain can also help your loved one find peace and acceptance and prepare for their transition to the next life.

  • How can you provide spiritual comfort that aligns with our beliefs?

You can ask the chaplain to provide spiritual comfort that aligns with your beliefs by telling them your beliefs and what kind of support you need. The chaplain can tailor their services to your needs, such as reading from your holy book, singing your favorite hymns, or performing your sacred rituals. The chaplain can also respect your wishes if you prefer not to have any spiritual support.

  • Are there rituals or practices that can bring peace and solace?

You can ask the chaplain if any rituals or practices can bring peace and solace to you and your loved one. The chaplain can suggest options that may suit your beliefs and preferences, such as meditation, yoga, breathing exercises, or aromatherapy. The chaplain can also help you perform any rituals or practices that are important to you, such as lighting candles, burning incense, or blessing water.

  • Can you help us find meaning and connect with our spirituality during this time?

You can ask the chaplain to help you find meaning and connect with your spirituality by sharing your thoughts and feelings with them during this time. The chaplain can help you explore the meaning and purpose of your life and the lessons and gifts your loved one has given you. The chaplain can also help you connect with your spirituality by encouraging you to express gratitude, forgiveness, and love to your loved one, God, or a higher power.

  • What do you want to know about our spiritual beliefs to help the hospice team identify special needs?

You can tell the chaplain what you want them to know about your spiritual beliefs to help the hospice team be aware of any special needs. For example, you can tell the chaplain if you have any dietary restrictions, clothing preferences, or cultural customs that the hospice team should respect. You can also tell the chaplain if you have any special requests or wishes for your loved one's care, such as playing music, reading passages, or saying prayers. The chaplain can communicate your needs and preferences to the hospice team and make sure they are honored.

Volunteers: Companionship and Care

What They Do: Volunteers are kind people who want to help you and your loved one. They can do many things for you, such as shopping, cooking, cleaning, or driving. They can also give you a break from caring for your loved one so you can rest, relax, or do something you enjoy. They can spend time with your loved one, talking, reading, playing games, or listening to music. They can make you and your loved one feel less lonely and happier.

Key Questions to Ask Your Coordinator

  • How can volunteers support us in our day-to-day tasks?

You can ask the volunteers to support you in your day-to-day tasks by telling them what you need and when you need it. For example, you can ask them to buy groceries, prepare meals, do laundry, or take out the trash. You can ask them to help you with paperwork, phone calls, or appointments. The volunteers will try to do what you ask or find someone else who can.

  • Can they spend time with their loved ones to provide company and conversation?

You can ask the volunteers to spend time with your loved one to provide company and conversation by telling them what your loved one likes and dislikes. For example, you can tell them what kind of books, movies, music, or hobbies your loved one enjoys. You can also tell them what topics your loved one likes to discuss or what stories they like to hear. The volunteers will try to match your loved one's interests and preferences and make them feel comfortable and valued.

  • Are there specific ways they can make our journey a bit easier?

You can ask the volunteers if there are any specific ways they can make your journey a bit easier by telling them what challenges or worries you are facing. For example, tell them if you feel stressed, tired, or overwhelmed. You can also tell them if you have questions or concerns about your loved one's care or condition. The volunteers will try to offer you some advice, support, or comfort. They can also connect you with other people or resources that can help you.

Hospice Aide: Personalized Comfort

What They Do: The hospice aide is a person who can help your loved one with their personal care needs. They can help your loved one with things like washing, dressing, brushing their teeth, or combing their hair. They can also help your loved one change their sheets, make their bed, or clean their room. They can make sure your loved one is comfortable and clean.

Key Questions to Ask Your Hospice Aide

  • How can the hospice aide help with my loved one's personal care needs?

You can ask the hospice aide how they can help with your loved one's personal care needs by telling them what your loved one needs and how often they need it. For example, you can ask them if your loved one needs help bathing every day, every other day, or once a week. You can also tell them if your loved one needs help getting dressed, putting on lotion, or clipping their nails. The hospice aide will try to follow your loved one's schedule and routine as much as possible.

  • Are there specific routines or preferences we should communicate?

You can tell the hospice aide if you and your loved one have specific routines or preferences. For example, you can tell them if your loved one likes to take a shower or a bath if they prefer warm or cold water, or if they have a favorite soap or shampoo. You can also tell them if your loved one likes to wear certain clothes, colors, or accessories or if they have a special pillow or blanket. The hospice aide will try to respect your loved one's choices and wishes.

  • How can we work together to ensure my loved one is treated respectfully and kindly?

You can communicate with and give feedback to the hospice aide to ensure your loved one is treated with respect and kindness. For example, you can tell them if your loved one is happy or unhappy with their care, if they have any compliments or complaints, or if they have any suggestions or requests. You can also thank them for their work and show them appreciation. The hospice aide will try to listen to you and your loved one and improve their service.

  • Can you show me how to provide care when you are not here?

You can ask the hospice aide to show you how to provide care when they are not here by asking them to demonstrate or explain what they do. For example, you can ask them to show you how to lift or move your loved one safely, wash or dry their hair, or apply or remove bandages. You can also ask them to give you tips or advice on making your loved one more comfortable or preventing . The hospice aide will try to teach you and answer your questions.

Registered Nurse: Expert Symptom Management

What They Do: The registered nurse is a person who knows a lot about how to take care of your loved one's health. They can help your loved one feel better by giving them medicine, checking their , and treating their wounds. They can also help you and your family understand what is happening to your loved one, and what you can do to help. They can talk to the other people on the hospice team, such as the doctor, the social worker, and the chaplain, and make sure everyone is on the same page. They can also answer any questions about your loved one's care.

Key Questions to Ask Your Hospice Registered Nurse

  • How can we manage symptoms like pain, nausea, or difficulty breathing?

You can ask the registered nurse how to manage symptoms like pain, nausea, or difficulty breathing by telling them what your loved one is feeling and how severe it is. The registered nurse can give your loved one medicine to ease their pain, calm their stomach, or help them breathe better. The registered nurse can also teach you how to use equipment like oxygen tanks, pumps, or syringes and how to monitor your loved one's symptoms.

  • What changes should we expect in my loved one's condition?

You can ask the registered nurse what changes you should expect in your loved one's condition by telling them what you have noticed and are concerned about. The registered nurse can explain what is expected and not and what signs to look for. The registered nurse can also tell you what to do if your loved one's condition worsens and when to call for help.

  • How can we communicate our concerns and needs to the team effectively?

By being honest and transparent with the registered nurse, you can effectively communicate your concerns and needs to the team. You can tell them what you are feeling, what you are worried about, and what you need. You can also ask them any questions and listen to their advice. The registered nurse can relay your concerns and needs to the rest of the team and make sure they are addressed.

  • What medications will be covered by hospice?

You can ask the registered nurse what medications will be covered by hospice by telling them what medications your loved one is taking and why they are taking them. The registered nurse can tell you which drugs are covered by hospice and which are not. The registered nurse can also help you get the medications covered by hospice and ensure they are stored and used correctly.

  • Are there any medications the patient should stop taking?

You can ask the registered nurse if there are any medications the patient should stop taking by telling them what medications your loved one is taking and why they are taking them. The registered nurse can tell you if any medications are unnecessary, harmful, or interfere with . The registered nurse can also help you safely dispose of any drugs that your loved one should stop taking.

  • How do scheduled visits work?

You can ask the registered nurse how scheduled visits work by telling them when you are available and how often you want them to visit. The registered nurse can tell you how they plan their visits and how long they usually stay. The registered nurse can also tell you what they do during their visits and what you can expect from them.

  • How are we notified about arrival times for those visits?

You can ask the registered nurse how you are notified about arrival times for those visits by telling them how you prefer to be contacted, such as by phone, text, or email. The registered nurse can tell you how they will tell you when they are on their way and when they will arrive. The registered nurse can also tell you what to do if you need to cancel or reschedule a visit or have an emergency.

Conclusion

I hope this article helps you understand your hospice care team better. Hospice care is a team effort involving many different people with different roles and skills. They all work together to provide you and your loved one with the best care and support. They are here for you; you can always ask them questions or share concerns. Remember, you are not alone in this journey.

Resources

Understanding the Role of a Hospice Care Team

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death.”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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