Treatment Preferences and Beliefs



Hospice staff are frequently called upon to discuss difficult, sensitive issues with patients and caregivers, often in emotionally charged situations. Discussion of the benefits and burdens of treatments such as CPR, artificial nutrition and hydration, hospitalization or shifting goals of care from cure to hospice or comfort care take a specialized skill set not often taught in formal professional education. Hospice staff need tools and training to accomplish this task effectively. This module will help staff learn the art of empathic conversations about treatment preferences, beliefs, and spirituality. This will lead to better understanding of patient/caregiver concerns and facilitate open discussions that are respectful of patient wishes.
 
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ElevatingHome Best Practices
  • All visiting staff and clinicians are trained in the art of empathic conversations.
  • Training includes the opportunity to role play and practice language that will facilitate identifying patient priorities and goals of care.

Treatment Preferences

Overview: Treatment preferences at the end of life address a range of potential interventions, including CPR, hospitalization, medications, nutrition, hydration and other interventions. It is particularly important for the hospice to understand the patient’s preferences at the end of life and ensure that the patient and caregiver are supported in carrying through with those stated preferences. Information sharing and support of patient and caregiver expression of treatment preferences arecentral to hospice philosophy, and are a part of hospice quality reporting. Discussion of end of life preferences has been under-utilized, often resulting in more aggressive treatment that generates worse quality of life for patients. Successful engagement can only be developed when it is based on collaboration, dignity and respect.
 
Why Address Treatment Preferences?
  • Seriously ill and dying patients who are given the opportunity to express their preferences regarding life-sustaining treatment are more likely to receive care consistent with their values, improving patient and caregiver outcomes, including greater satisfaction with care. 
  • CMS now requires hospices to initiate a discussion with patients or caregivers about spiritual beliefs/existential concerns within five days of admission.
ElevatingHome Best Practices
  1. The patient/responsible party is asked about their preference regarding the use of CPR.
  2. The patient/responsible party is asked about preferences regarding life-sustaining treatments other than CPR.
  3. The patient/responsible party is asked about preference regarding hospitalization.
  4. Hospice staff should visit multiple times and bring up multiple discussions about treatment preferences to ensure patient and caregiver support of the decisions.
Helpful Hints and Tools
  1. Preferences are best obtained directly from the patient, or the caregiver or responsible party if the patient cannot self-report.
  2. Items in the HIS do not represent an exhaustive list of patient preferences that hospices should consider. Completion of the HIS should not replace a thorough and ongoing discussion of patient preferences throughout an episode of care.
  3. There is no CMS comprehensive list of life-sustaining treatments. There should be documentation in the clinical record indicating that a member of the hospice staff or IDT attempted to discuss preferences for any life sustaining treatment other than CPR.
  4. In discussions, ensure the patient/caregiver understand the implications of various choices.
  5. See the section on Artful Conversations for a detailed discussion of how staff can best approach these topics. Utilize it as a training module and allow staff practice time to improve their comfort level with difficult discussions.
Critical Interventions
  • For patients not in immediate crisis, introduce the range of end of life decisions at the initial visit. Specific treatment preferences must be obtained through a discussion between hospice personnel and the patient/caregiver. Hospice personnel should have a discussion with newly admitted patients at the initial visit and revisit the topic regularly to assure understanding and continued agreement.
  • Preferences regarding CPR, life-sustaining treatments other than CPR and preferences regarding hospitalization must be discussed before or within five days of admission and documented in the clinical record. CMS requires documentation that the discussion took place or was refused.
  • Hospices should review and reaffirm any pre-admission documentation about treatment preferences with the patient and caregiver. For example, have conversations with the patient and caregiver to ensure understanding of formalized advance directives, Durable Powers of Attorney, and POLST if you are in a state that uses that form and document as needed.
  • Coach caregivers on ways to prevent crisis hospitalizations if hospitalization is not the preferred plan. Assure they know how to contact hospice staff 24 hours a day. Plan ahead for access to medications, supplies, or DME such as oxygen that might be needed on an emergent basis. Reassure caregiver and assess their comfort with the care plan frequently.
  • Other treatment preferences typically assessed by hospices include preferences for nutrition, hydration including IVs and feeding tubes, opioid pain management and stopping other treatments not directly related to patient comfort.
  • Where patients are unable to communicate their needs and preferences, caregiver surrogates and documented advance care plans can provide guidance.

Identifying Patient Beliefs and Spiritual Needs

Patient and caregiver engagement begins with expert communication based on that includes therapeutic discussions of spiritual needs and beliefs. Addressing these needs is central to hospice philosophy. This relationship also impacts the patient and caregiver experience of care, and is part of hospice quality reporting. Successful engagement is based on collaboration, dignity and respect.
 
Why Beliefs and Spirituality?
  • The National Consensus Project for Quality Palliative Care (NCP) recognizes the importance of spiritual care. NCP lists as a preferred practice: "Develop and document a plan based on an assessment of religious, spiritual, and existential concerns using a structured instrument and integrate the information obtained from the assessment into the palliative care plan.”
  • Spirituality as been associated with increased coping skills and better quality of life at the end of life, and spiritual support has been shown to reduce suffering.
  • Culture needs to be included in understanding beliefs and spirituality preferences.
  • CMS now requires hospices to initiate a discussion with patients or caregivers about spiritual beliefs/existential concerns within five days of admission.
ElevatingHome Best Practices
  1. The patient and/or caregiver are asked about spiritual/existential concerns.
  2. The results of those discussions are documented and incorporated into the Care Plan.
Critical Interventions
  • CMS requires that a discussion take place to assess spiritual concerns. Hospices should offer patients the opportunity to discuss spiritual concerns as well as document a plan to address patients’ spiritual needs involving members of the interdisciplinary team.
  • The patient/caregiver should be asked about spiritual/existential concerns. Assessment domains recommended include:
    • Patient/caregiver source of strength
    • Important relationships and organizations
    • Support network
    • Current spiritual needs
    • Theological issues
    • Any cultural beliefs or rituals surrounding death
  • Incorporate patient beliefs or spiritual concerns into the care plan.
  • Every patient/caregiver should be offered pastoral care by someone who is able to address spiritual needs, beliefs or concerns if requested.
  • Train all staff on how to initiate culturally appropriate and sensitive discussions about spiritual beliefs and offer education on cultural and religious traditions and how those traditions impact end of life care planning.
  • Key principles of taking a spiritual history include:
    • Taking seriously the importance of spirituality in the quality of life of each person.
    • Addressing spirituality in each visit with a patient.
    • Respecting patients’ privacy.
    • Practicing awareness of one’s own beliefs.
    • Taking care not to impose those beliefs on others.
    • Making referrals to chaplains or other spiritual resources as appropriate.
  • Plan ahead to ensure that the spiritual advisor of the patient’s preference is available in the final hours.

Artful Conversations

Why Artful Conversations?
  • Helps develop relationships based on trust and mutual respect
  • Moves us toward a partnering relationship
  • Allows patient and caregiver to disclose concerns
  • Facilitates a safe environment for the patient and caregiver as life is nearing its end
Critical Interventions
The critical intervention to is for staff to facilitate artful conversations through training and rehearsal and to consistently implement these conversations to support patients and families at the end of life.
  • In Artful Conversations, staff should communicate by using conversations and presence to become a healing presence. This means:
    • Learning to be consciously and compassionately "in the moment."
    • Believing and affirming the other person's potential for wholeness or growth.
    • Learning we don’t have to solve all the problems.
    • Clearing our minds of our own agendas.
    • Honoring the other person as an equal.
    • Valuing the uniqueness and blessing of the other person.
  • Levels of listening include: ignoring, pretend listening, selective listening, as well as attentive and empathetic listening. Staff should be trained in attentive, empathic listening. Empathic listening:
    • Begins with the intent to understand the other person BEFORE being understood.
    • It’s all about the other person.
    • It’s not about YOU.
    • It’s listening only to understand.
  • The first key component to empathic listening and artful conversations is to establish a presence:
    • Sit down, stop talking and start listening
    • Use eye contact appropriately
    • Allow adequate time
    • Prevent interruptions
  • The next key component is seeking to understand. Ask open-ended questions, such as:
    • "What have the last few weeks been like for you?"
    • "What are the doctors telling you about your condition?" and
    • "What is the most difficult thing for you at this time?"
  • Clarify, reflect and explore to increase understanding by using phrases such as:
    • "Let me see if I got this right. I thought I heard you say"
    • "Is this what you mean?"
    • Listen for what is NOT being said as well.
    • Do not express your views until the speaker is satisfied you understand what she is communicating.
  • Train staff not to use autobiographical listening as it does not further the goal of facilitating respectful decision-making. Autobiographical listening includes:
    • Listening from our own paradigm.
    • Comparing the speaker’s experience with our own.
    • Evaluating the speaker’s experience. Advising or telling the person what to do based on our experiences.
    • Listening to solve the problem.
    • Planning responses while listening.
  • Staff should also be taught the importance of suspending judgment.  This entails:
    • Being aware of your preconceived ideas.
    • Leaving your agenda at the door.
    • Not jumping to conclusions.
    • Avoiding "We are right" and "You are wrong."
    • Not reacting outwardly with negative nonverbal language.
    • Honoring and accepting that the patient and caregiver have good intentions.
  • Teach staff that silence can be an effective tool if used appropriately. It can be interpreted both positively and negatively. It can indicate manipulation, used to put pressure on the other person, or indicate defiance, disagreement or hostility. But it can also convey a profound sense of awe, respect or sorrow and help create a sacred listening space for empathic listening. Excellent communicators learn to use silence as a positive tool for communication. They do this by:
    • Allowing silence when they sense its effectiveness
    • Offer silence as a sign of respect
    • Interpret the silence of others appropriately
    • Avoid feeling pressured to "fill the silence" when the silence is being used to manipulate the conversation.
  • Staff should be prepared for a broad range of reactions including outbursts of strong emotions.  Useful techniques to handle this include:
    • Acknowledge the emotions and reactions
    • Allow time for these emotions and reactions
    • Listen quietly and attentively
    • Encourage the description of these feelings
    • Use non-verbal communication
  • Artful conversations should close by summarizing and checking for understanding. Phrases that can be used include:
    • "This is really important. Is this what you mean?"
    • "What is it you want me to know?"
    • "Is there anything else you want me to know?"
    • "Let me make sure I am really clear. Is this what you mean?"
    • "Is there anything else I can do for you at this time?"
See the Resources page for links to resources on treatment preferences and beliefs
Page Updated August, 2019