Communication in

Serious IllnessConstance Dahlin, ANP-BC, ACHPN, FPCN, FAAN

Palliative Care SpecialistBoston, MA

Disclosure Statement of Financial Interest

I, Constance Dahlin, Have reported no relevant conflict of interest for the purpose of the

MiPCT Summit Care Manager Session on Palliative Care

Disclosure Statement of Financial Interest

I, Moni Franks, Have reported no relevant conflict of interest for the purpose of the

MiPCT Summit Care Manager Session on Palliative Care

Continuing Education Credits and Evaluation

Objective

Describe the importance of communication with patients with

serious illness

Communication is the cornerstone of palliative care. The delivery of quality palliative care is dependent on skillful

communication..

Communication is a powerful therapeutic tool. When used well, communication can empower patients and families with a sense of control. It may also reduce uncertainty and provide a basis for action.

DeathTime

Hea

lth S

tatu

s10-15% (trauma, accident, MI, fatal stroke)

Illness/Dying TrajectoriesSudden Death,

Unexpected Cause

Field & Cassel, 19978

DeathTime

Hea

lth S

tatu

s

Field & Cassel, 1997

Illness/Dying TrajectoriesSteady Decline, Short

Terminal Phase 

Cancer 

9

Illness/Dying TrajectoriesSlow Decline, Periodic

Crises, Death

He a

l th S

tatu

s

Time

CrisesDeath

DeclineHCHF, COPD

Field & Cassel, 1997 10

Palliative Care

World Health Organization, 2002

Curative Focus:Disease-Specific Treatments

Palliative Focus:Comfort / Supportive Treatments

BereavementSupport

Nurse’s Responsibilities in the Care of Dying Patients

Nurses have:- a duty to educate patients and families about end-of-life issues, - to encourage the discussion of life preferences, - to communicate relevant information for any decision, and - to advocate for the patient.

ANA

ANA Standards of Practice, Standard 11 2010

• Assessing communication format preferences of patients, families and colleagues

• Assessing his or her own communication skills• Conveying information to patients, families

and the interdisciplinary team• Maintaining communication to promote safe

and effective transfers of care• Providing professional perspective in health

care discussions

ANA Code of Ethics for Nurses Provision 1.3 (2001) Nursing care is directed toward meeting the comprehensive needs of patients and their families across the continuum of care. This is particularly vital in the care of patients and families at the end of life to prevent and relieve the cascade of symptoms and suffering that are commonly associated with dying.

Nurses are leaders and vigilant advocates for the delivery of dignified and humane care.

Nurses actively participate in assessing and assuring the responsible and appropriate use of interventions in order to minimize unwarranted or unwanted treatment and patient suffering (p.7)

ANA Position Statement, Registered Nurses’ Roles and Responsibilities in Providing

Expert Care and Counseling at the End of Life 2010

“The counseling a nurse provides regarding end-of-life choices and preferences for individuals facing life-limiting illness, as well as throughout the patient’s life span, honors patient autonomy, and helps to prepare individuals and families for difficult decisions that may lie ahead.”

ANA Position Statement, Registered Nurses’ Roles and Responsibilities in Providing

Expert Care and Counseling at the End of Life 2010

End-of-life choices are a quality of life issue. Nurses, individually and collectively, have an obligation to provide comprehensive and compassionate end-of-life care, including the promotion of comfort, relief of pain, and support for patients, families, and their surrogates when a decision has been made to forgo life-sustaining treatments.

Nurses have a duty to1) Educate patients and their families about the use of biotechnologies at the end of life, termination of treatment decisions and advance directives;2) Encourage patients to think about end-of-life preferences in illness or a health crisis;3) Support patients, their families, and their surrogates to have end-of-life discussions with their physicians;4) Ensure advance directives are implemented;5) Communicate known information that is relevant to end-of-life decisions to appropriate health care personnel;6) Advocate for a patient's end-of-life preferences regardless of surrogate decision maker’s or physician’s desire to not honor them if indeed the preferences reflect beneficent care.

Nursing Care and Do Not Resuscitate (DNR) and

Allow Natural Death (AND) Decisions

Nurses must advocate for and play an active role in initiating discussions about DNR with patients, families, and members of the health care team.

DNR DiscussionsAll nurses ensure that whenever possible, the DNR decision is a subject of explicit discussion between the health care team, patient, and family (or designated surrogate), and that actions taken are in accordance with the patient's wishes. All nurses facilitate and participate in interdisciplinary mechanisms for the resolution of disputes between patients, families, and clinicians’ DNR orders (Cantor, et al., 2003).

The American Nurses Association Recommendations 1) Clinical nurses actively participate in timely and frequent discussions on changing goals of care and initiate DNR/AND discussions with patients and their families and significant others.2) Clinical nurses ensure that DNR orders are clearly documented, reviewed, and updated periodically to reflect changes in the patient's condition (Joint Commission, 2010).

The Nurse as TranslatorNurses often act as translators between the various health disciplines and providers and the patient/family.

• Tell me about your condition?• How much information do you want to know?• How do you make decisions?• Is there anyone else you want to know or whom we

should talk to about your condition, treatment or process?

• Are there any cultural/religious considerations to your health care that I should know?

Nurse Patient RelationshipThere are four basic elements to communication: imparting information, listening, information gathering, presence and sensitivity.

Routine Planned Meetings (1)the discussion of prognosis, particularly if

life expectancy is thought to be between 6 and 12 months;

(2)the discussion of treatment options with low probability of success

(3)the discussion of hopes and fears. (4)End-of-life communication in more

"routine" circumstances, when stability or recovery is predicted, normalizes the discussion of advanced care planning.

Assisting families to make decisions

Consider the overall situation (support systems, economics, technical aspects, locality and other issues).– Respond to their questions within a reasonable time and

encourage them to ask questions, as well.– Ask—“What would you like me to do? What are your

expectations? What do you need?”– When you do not know what to do, seek assistance.– Ask yourself, “What would I do if this was my family

member?”– Take the time to listen (Coyne et al., 2009; Dahlin, 2010;

Ting-Toomey, 2010).– Remind families that they are not making the decision, but

giving you information that guides the decision consistent with the patient’s wishes

Family system challenges• Lack of continuity among caregivers• Consistent lack of health care team communication where mixed

messages are given• Death in the family may be a new experience and existing coping

skills may not be helpful-new coping skills may be required.• Perceived or real lack of support among family members• Inability to care for family member, either physically or emotionally,

may lead to distress in family caregivers. This may lead to the patient having feelings of abandonment and isolation.

• Illness/dying/death/grief may still be a taboo topic for many families.• Adolescents want to be informed with full honest disclosure.• Some family members play active roles when communicating with

the medical team-others take a less active role (i.e. “The doctor said this is what we have to do.”).

Boyd et al., 2011; Rabow et al., 2004

"Urgent" Situations (1)the patient is facing imminent

death; (2)the patient is talking about wanting

to die;51

(3) the patient or family is inquiring about hospice;

(4)the patient has recently been hospitalized for severe, progressive illness;

(5) the patient is experiencing severe suffering and poor prognosis

What constitutes Palliative Care?

• Appropriate care when curative treatment and life sustaining treatment are no longer appropriate nor desired.

• Appropriate care when patients have advanced illness and want aggressive symptom management with curative treatment

• Aggressive, well-planned symptom control• Anticipation and planning for future symptoms to prevent

suffering• Maximization of patient’s dignity and control• Minimization of suffering• Psychosocial support for patient and family• Protection from burdensome interventions

Why communication at EOL difficult

• Emotional – Makes patient and family sad, makes them feel

helpless and out of control– Makes clinician sad, invokes guilt and sense of

failure• Time Sensitive with Rapid Change of

Status– stress of situation– disease progression– window of opportunity

Barriers to Communication

• Social – personality and communication style

• Cultural• Professional – health care role• Organizational• Regulatory

Communication Essential

• There is time along the disease trajectory to help guide the family with good communication

• Skilled communication helps patients and families at times critical decision making and transitions

• Promotes psychological healing• Allows for dying as well as possible

Differences in Communication Style

• Lack of literature for non-physicians• Sometimes nurses and other

providers more tentative than physicians

• Concerns about nursing role in discussions and scope of practice issues

Differences in Information Gathering

• Nurses and other providers gather at bedside

• Information through procedures• Not a formal interview

Patient Family Communication

• Encourage communication by• Nodding one’s head;• Comments like “I see,” or “Tell me more”;• Repeating 2-3 words from their last

sentence, “…you were shocked by the diagnosis”;

• Reflecting, “So you mean that….” Or, “If I understand what you are saying, you are feeling…..”.

(Dahlin, 2010)

Advice…..• Take your time in giving advice.• Try not to give advice if at all

possible unless asked• If you do give advice, do it

unassumingly• “Have you thought about….”• “A friend of mine once tried…”• “When I went through this with my

friend, mother, etc. I found this to be helpful…”

Types of communication• Giving Bad News• Transitioning to Palliative Care• Goals of Care/Advanced Care

Planning• Prognosis Discussions• Existential questions -Why• Discipline specific questions

Guidelines for Encouraging Conversation

• Find out if patient/family want to talk• Setting the right atmosphere• Assessment of patient and family

understanding• Discuss goals of care and goals of

care

Communication

• Ask how much the patient/family want to know

• If pt doesn’t want to know, who do they want to know

• Who will make decisions• Has patient discussed their values, preferences, and beliefs

Communication

Major strategy1. Open end questions are essential 2. Lack of agenda can help open discussion 3. Keeping discussion open by owning thoughts to make it less threatening– I am curious– I am worried – I wonder

Opening Questions• How are things going for you/your family?• How do you think you/your loved one is

doing?• What do you understand about your

condition?• What has the doctor told you/your family?• What are you hoping from this

treatment/admission?• How can we support/help you?• Help me understand..• I am worried…

FIFE Model EPERC Fast Fact # 17

F = Feelings related to fears and concerns of illness

(Concerned, fears, feelings)I = Ideas and explanations of the cause(Ideas about what, think might be going on,

what it means) F= Functioning on daily life (Affecting your life, change in routine)E= Expectations(Expect, hope, expectation)

Reframing the Conversation Particularly If a Conflict

• Be curious about patient and colleague’s perspective by hearing the story

• Express views and feelings from the “I feel position”

• Take the time to talk and LISTEN• Problem solve together with a

common goal.

Communication• N – Naming It – It seems as if• U – Understanding – I ‘m hearing you

say• R – Respecting – I impressed that• S – Supporting – I am here and I will

be here• E – Exploring – Help me to

understand

“ The very most we can do for patients is to make it better

than it would have been if we were not there.”

Being there…

Rando, T. (1984). Grief, Dying and Death: Clinical Interventions forCaregivers. Champaign Il: Research Press