Introducing hospice to patients and families

Being diagnosed with a life-threatening illness can be isolating and dehumanizing, particularly as a disease progresses.

When treatment has been exhausted or refused, patients and families want doctors to realistically discuss their disease processes while fostering hope – emphasizing what can be done to manage the disease, to control symptoms and pain and to offer community resources. There are many programs and community tools which provide emotional and practical support while allowing the patient to live with dignity in a caring environment.

Additionally, most patients appreciate their physician’s assistance in setting realistic goals for the future and discussing the practicalities of day-to-day living.

Physicians are uniquely positioned to help patients and families considering hospice care by:

  • Offering Medical information
  • Showing care and understanding
  • Balancing realism and hope

When talking with patients and their loved ones, it’s best to:

  • Listen carefully and respectfully
  • Ask permission to open issues for discussion
  • Ask open-ended questions to elicit more detail about the patient’s understanding of his disease progression and how the family must adjust to accommodate changing symptoms
  • Ask whether the patient is comfortable exploring options beyond aggressive treatment which will enhance his quality of life at home

Preparing for a poor outcome is of great value to the mental and emotional wellbeing of the patient and their family. Physicians and other medical professionals can facilitate this difficult process with compassion by offering open communication and next step development. Anxieties can be calmed with honesty, empathy and a readiness to listen to a patient and caregiver’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 daily life?
  • Do you find this illness is creating any stresses for you or your family?
Assess understanding of prognosis
  • What have your other doctors told you about your condition?
  • What is your understanding of this most recent problem you are experiencing?
  • From what you know, what is your understanding of how this disease process my progress?
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 test results and options?
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?
Discussing possible fears
  • Would you like to talk about how things might change over the time ahead?
  • Do you have any concerns about home circumstances at the moment or in the future?
Assessing emotional preparedness for dying
  • What crisis have you had before in your life?
  • What was it that helped you to get through?
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?
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?
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 temporary 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

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