Introducing Hospice
Introducing hospice to patients and families
Physicians are uniquely positioned to help patients and families entering hospice care by 1) offering medical information, 2) showing care and understanding and 3) balancing realism and hope.
From the patient perspective, patients want doctors to realistically discuss their disease while fostering hope --- emphasizing what can be done such as pain and symptom control, emotional and practical support, having dignity and being in a caring environment.
Additionally, patients want their doctors to help them set realistic goals for the future and discuss the practicalities of day-to-day living. Several key aspects should be utilized when talking with patients and families:
- Listen carefully and respectfully
- Ask permission to open up issues for discussion
- Ask open-ended questions to elicit more detail
When patients and families prepare for death by discussing death and dying issues, physicians and other medical personnel can facilitate the process. Anxieties can be calmed with honestly, empathy and a readiness to listen to the patient’s concerns.
Questions to facilitate conversation regarding end-of-life issues and hospice care*:
Starting the conversation
- We’ve talked about the possible options for treatment but I also wondered if there are other things you would like to talk about such as how this illness is affecting you as a person?
- I am wondering what effect this illness is having on your life generally?
- Do you find the illness is creating any stresses in the family?
Discussing possible fears
- Are there any particular fears about what may happen?
- Do you have any concerns about home circumstances at the moment or in the future?
- Would you like to talk about how things might change over the time ahead?
Identify other decision makers
- Is there anyone you rely on to help you make important decisions?
- Who in the family should be with us when we discuss the results and options?
Assess understanding of prognosis
- What have your other doctors told you about your condition?
- Have they talked to you about what this latest problem might mean for you?
- From what you know, do you think that over the next month your cancer will get better, worse, or stay the same?
Exploring support for the patient on a physical and emotional level
- Who would you say are the people who support you – the people you can count on?
- How are they coping? Are they helping with your care?
- How do you think those left behind will manage?
Define the patient’s goals for care
- What do you hope for most in the next few months?
- Is there anything that you’re afraid of?
Assessing emotional preparedness for dying
- What crisis have you had before in your life?
- What was it that helped you to get through?
Identify needs for care
- It can be very difficult to care for a family member at home, and no one can do it alone. Have you thought about what kinds of help you might need?
- Would it help if we could find a way to deliver your medications to you?
- Would it reassure you if we could send a nurse to your home to check on you?
Summarize and link goals with care needs
- So I think I understand that your main goal is to stay at home and spend time with your family. To do that, we will need to help you in several ways, for instance, by sending a nurse to your home and giving you both some help around the house. Is that right?
Reframe goals
- I wish we could guarantee that we could keep you alive until your daughter’s graduation, but unfortunately we can’t. Perhaps we can work together on a letter for her to read on that day, so she will know you are with her in spirit in case you can’t be there in person.
Spiritual preparedness
- Do you have any particular belief systems? How are those beliefs helping you?
- Is there someone you would like to talk to?
- Do you have any spiritual questions?
- What have been the high points in your life? What are you particularly proud of?
Introduce hospice
- One of the best ways to give you the help that you will need to stay at home and spend time with your family is a program called hospice. Have you heard of hospice?
- Hospice is able to provide more services and support at home than most other care programs.
- The hospice team has a lot of experience caring for seriously ill patients at home.
- Hospice is not a place but a special kind of care focusing on relief of pain, symptom control, and spiritual and emotional support. Care goes to the patient and family caregivers.
- The majority of hospice care takes place in the home, where the person can be surrounded by family and familiar settings. Yet inpatient services are available if symptoms cannot be properly attended to at home.
- The common statement made by families who chose hospice for their loved one is, “we wish we had known about hospice sooner.”
Responding to emotions elicited and providing closure for patients facing end-of-life decisions:
Acknowledge Response:
- “You seem surprised to learn how sick you are.”
- " I can see it’s not easy for you to talk about hospice.”
Legitimize Reaction:
- “Many people are understandably upset when they learn how ill their loved one is and that hospice is a possibility.”
Empathize:
- “I can imagine how hard it is for both of you; you care about each other so much.”
Explore concerns:
- “Tell me what’s upsetting you the most.”
Explain hospice goals:
- “Hospice doesn’t help people die sooner. Hospice helps people die naturally, in their own time.”
- “Hospice helps people live as well as they can for as long as they can.”
Reassure:
- “Hospice’s goal is to improve your quality of life as much as possible for whatever time you have left.”
- “Hospice can help you and your family make the most of the time you have left.”
Recommend hospice:
- “I think that hospice would be your best choice right now, but of course the final decision is yours.”
- “Hospice could be very helpful to you in the ways that we’ve talked about, but I realize it’s a big decision. I’d like to arrange for a hospice nurse to visit you so you can decide for yourself whether hospice is right for you.”
*Information compiled from the following sources:
Communication at Times of Transitions: How to Help Patients Cope with Loss and Re-Define Hope
Evans, Wendy G., Tulsky, James A., Back, Anthony L. Arnold, Robert M.
Cancer Journal Sep/Oct 2006 Vol 12 Issue 5
Nieumeyer S., BSocSci (hons)(Clin pract) UcT, mTh (Pastoral therapy) UNISA
Manager: Counseling and Social Services, Helderberg Hospice
Hosking, M, MCChB (UCT), DCH, DCOG, DA, DipPhil (Palliative Medicine)
Medical Director Helderberg Hospice
