palliative care how to open the door what is on the other side charles s. stinson, md medical...

Palliative Care Palliative Care How to Open the DoorHow to Open the Door

What is on the Other SideWhat is on the Other Side

Charles S. Stinson, MDCharles S. Stinson, MD

Medical DirectorMedical Director

Palliative Care ServicesPalliative Care Services

The ApproachThe Approach

The Basically HealthyThe Basically Healthy

Those with Advanced or Chronic Those with Advanced or Chronic Illness(es)Illness(es)

Imminently DyingImminently Dying

The ApproachThe Approach

Life Prolonging GoalLife Prolonging Goal

Restorative or Rehabilitative Restorative or Rehabilitative Goals/Maintenance of FunctionGoals/Maintenance of Function

ComfortComfort

Timing the discussionTiming the discussion

Any non-elective admission to hospitalAny non-elective admission to hospital Any elective admission for a high-risk Any elective admission for a high-risk

surgical procedure.surgical procedure. The diagnosis of a serious, incurable or The diagnosis of a serious, incurable or

end-stage illness.end-stage illness. Any clinical deterioration that signals a Any clinical deterioration that signals a

change in prognosis.change in prognosis.


Any admission to a critical care unit.Any admission to a critical care unit. A patient who considers stopping therapy A patient who considers stopping therapy

for a chronic or end-stage condition.for a chronic or end-stage condition. A patient feels that his/her quality of life is A patient feels that his/her quality of life is

unacceptable.unacceptable. The physician feels that further non-The physician feels that further non-

palliative treatment would be futile.palliative treatment would be futile.


Any time a patient or family member Any time a patient or family member brings up discussions about appropriate brings up discussions about appropriate treatments or code status.treatments or code status.

Assessing ReadinessAssessing Readiness

““If you were to get very sick, have you thought If you were to get very sick, have you thought about how you want to be cared for during this about how you want to be cared for during this time?”time?”

““Is there anyone you trust to make medical Is there anyone you trust to make medical decisions for you, and have you talked with this decisions for you, and have you talked with this person about what is important to you?”person about what is important to you?”

““Can we talk about this today?”Can we talk about this today?”

Assessing ReadinessAssessing Readiness

Not Ready to EngageNot Ready to Engage

““I do not plan to get sick.”I do not plan to get sick.”

““I don’t want to burden my family.”I don’t want to burden my family.”

Explore concerns, appeal to the benefits of Explore concerns, appeal to the benefits of the process (reducing SDM burden, the process (reducing SDM burden, maintaining control, achieving peace of maintaining control, achieving peace of mind).mind).

Educating and MotivatingEducating and Motivating

““Because of an illness or an accident, most Because of an illness or an accident, most patients will be unable to make their own patients will be unable to make their own decision at some time in their life.”decision at some time in their life.”

(Up to 76% of patients at end of life are not (Up to 76% of patients at end of life are not decisional.)decisional.)


““When patients talk with me and their loved When patients talk with me and their loved ones about what would be important to ones about what would be important to them if they were to become very sick, it them if they were to become very sick, it helps them to keep a sense of control helps them to keep a sense of control about their medical care and to have about their medical care and to have peace of mind.”peace of mind.”


ACP prevalence nationally is 20-30% in the ACP prevalence nationally is 20-30% in the general population and less than 50% for end general population and less than 50% for end stage illnessstage illness

Palliative population at FMC 49% patients have Palliative population at FMC 49% patients have HCPOA and 35% living willsHCPOA and 35% living wills

Nationally, AD are available to the physician at Nationally, AD are available to the physician at initial time of treatment 25% of the timeinitial time of treatment 25% of the time

Palliative population at FMC, 22% pts with AD Palliative population at FMC, 22% pts with AD have HCPOA documents available at time of have HCPOA documents available at time of initial treatment and 23% have living willsinitial treatment and 23% have living wills


At FMC, for the palliative population, 21 At FMC, for the palliative population, 21 patients (2%) have a MOST form at the patients (2%) have a MOST form at the time of initial contact and 38 patients (3%) time of initial contact and 38 patients (3%) have a MOST form completed by the have a MOST form completed by the palliative team prior to discharge from the palliative team prior to discharge from the hospitalhospital


Retrospective cohort of 1711 patients from a Retrospective cohort of 1711 patients from a random sample of 90 nursing facilities in random sample of 90 nursing facilities in Oregon, Wisconsin, and West VirginiaOregon, Wisconsin, and West Virginia

Comparison of EOL wishes expressed through Comparison of EOL wishes expressed through POLST (Physician Orders for Life Sustaining POLST (Physician Orders for Life Sustaining Treatment) v. more traditional means.Treatment) v. more traditional means.

Pts with POLST were more likely to have their Pts with POLST were more likely to have their preferences recorded, and those who chose preferences recorded, and those who chose comfort measures only were less likely to comfort measures only were less likely to receive medical interventions.receive medical interventions.


““Because making decisions for someone is Because making decisions for someone is very stressful, you could help to take the very stressful, you could help to take the burden off of your family/friends by starting burden off of your family/friends by starting to think about what would be important to to think about what would be important to you if you became very sick.”you if you became very sick.”

Framing the discussionFraming the discussion

Goals of care should be discussed rather than Goals of care should be discussed rather than “code status”“code status”

Explore patient/family’s values, current Explore patient/family’s values, current perception of their illness, hopes for the future.perception of their illness, hopes for the future.

Understand goals of care ANDUnderstand goals of care AND

Prioritize with the patient and family:Prioritize with the patient and family:

Prolongation of Life, Prolongation of Life,

Maintenance of Current Status, Maintenance of Current Status,

ComfortComfort

Framing the DiscussionFraming the Discussion

Focus on the patient’s goals and values, Focus on the patient’s goals and values, not the disease:not the disease:

““How can we help you live well as this point How can we help you live well as this point in your life?in your life?

NOTNOT

““How can we treat your disease?”How can we treat your disease?”


We are in Health CARE, We are in Health CARE,

NOTNOT

Health TREATMENT.Health TREATMENT.


““

How can we help you live well?”How can we help you live well?”

““What fears or concerns do you have?”What fears or concerns do you have?”

““What or who helps or supports you when What or who helps or supports you when you are in distress?”you are in distress?”

Use of Neutral LanguageUse of Neutral Language

““SOMESOME patients say that if they became so sick patients say that if they became so sick that they could not recognize or talk to their that they could not recognize or talk to their loved ones (for example if they had dementia or loved ones (for example if they had dementia or were in a coma), they would want all possible were in a coma), they would want all possible treatments to prolong their life. treatments to prolong their life. OTHEROTHER patients patients say they would rather have care focused on say they would rather have care focused on comfort. Which kind of person are you?”comfort. Which kind of person are you?”

MOST, MANY, A FEW are not neutral, but may be MOST, MANY, A FEW are not neutral, but may be important to give weight to appropriate important to give weight to appropriate treatments.treatments.

Exploring ChangesExploring Changes

““Your health has changed/will change over Your health has changed/will change over time. Sometimes patients can get used to time. Sometimes patients can get used to these changes and sometimes they these changes and sometimes they cannot. In the past, you told me that (e.g., cannot. In the past, you told me that (e.g., staying out of the hospital) was important staying out of the hospital) was important to you.”to you.”

Exploring ChangesExploring Changes

Treatment preferences and values change Treatment preferences and values change when health changes: ADAPTABILITYwhen health changes: ADAPTABILITY

Treatment preferences and values change Treatment preferences and values change when health changes: BURDENS OF TXwhen health changes: BURDENS OF TX

Clarifying and Articulating Patient’s Clarifying and Articulating Patient’s Values over TimeValues over Time

““Patients are often deeply affected by their Patients are often deeply affected by their past medical experiences.”past medical experiences.”

““Have you seen someone on Have you seen someone on television/has someone close to you/had television/has someone close to you/had your own experience with serious illness your own experience with serious illness or death?”or death?”

““If you were in this situation (again), what If you were in this situation (again), what would you hope for? What would you be would you hope for? What would you be most worried about?”most worried about?”


““Did this situation make you think of ways of Did this situation make you think of ways of being that would be so unacceptable that you being that would be so unacceptable that you would consider it worse than death?”would consider it worse than death?”

““Some patients say that if they became so sick Some patients say that if they became so sick that they could not recognize or talk to their that they could not recognize or talk to their loved ones (for example if they had dementia or loved ones (for example if they had dementia or were in a coma), they would want all possible were in a coma), they would want all possible treatments to prolong their life. Other patients treatments to prolong their life. Other patients say they would rather have care focused on say they would rather have care focused on comfort. Which kind of person are you?”comfort. Which kind of person are you?”


““When (e.g., you were in the hospital with When (e.g., you were in the hospital with your heart failure, when your brother died), your heart failure, when your brother died), did this situation change your opinion did this situation change your opinion about the ways of being that would be about the ways of being that would be unacceptable or a state worse than unacceptable or a state worse than death?”death?”

““If you went through this situation again, If you went through this situation again, would it be worth it to you?”would it be worth it to you?”

Establishing Leeway in Establishing Leeway in Surrogate Decision MakingSurrogate Decision Making

““If your loved ones have to make medical If your loved ones have to make medical decisions for you, they have to think about decisions for you, they have to think about what you said in the past, but also about what you said in the past, but also about what the doctors are telling them about what the doctors are telling them about your medical condition and what they are your medical condition and what they are able to do for you. If these differ from one able to do for you. If these differ from one another, this can be very stressful for your another, this can be very stressful for your loved one.”loved one.”


““Having told me what is important to you, Having told me what is important to you, what if your surrogate finds it difficult to what if your surrogate finds it difficult to provide this for you?”provide this for you?”

““What if it is too hard for loved ones to What if it is too hard for loved ones to provide care for you/help you die at provide care for you/help you die at home?”home?”


““What if, based on changes in your health, the What if, based on changes in your health, the health care team recommends something health care team recommends something different from what you have told your loved different from what you have told your loved one?”one?”

““Will you give your loved one(s) permission to work Will you give your loved one(s) permission to work with your health care team to make the best with your health care team to make the best decision they can for you even if it may differ decision they can for you even if it may differ from what you said you wanted in the past?”from what you said you wanted in the past?”


““Are there certain decisions about your Are there certain decisions about your health that you would never want your health that you would never want your loved one to change under any loved one to change under any circumstances?”circumstances?”

Counterproductive BehaviorsCounterproductive Behaviors

Behavior One:Behavior One:

The clinician initiates the discussion about The clinician initiates the discussion about goals of care without assessing the goals of care without assessing the readiness of patient and family to consider readiness of patient and family to consider death and dying issuesdeath and dying issues

Implies a task oriented approach to “get the Implies a task oriented approach to “get the DNR”DNR”


The clinician initiates the discussion about goals of care without assessing the The clinician initiates the discussion about goals of care without assessing the

readiness of patient and family to consider death and dying issuesreadiness of patient and family to consider death and dying issues

Motivational interviewing needed:Motivational interviewing needed: What do you understand about your illness?What do you understand about your illness? Where do you see things going with your Where do you see things going with your

illness?illness? What questions or concerns do you have?What questions or concerns do you have? Are there things that particularly worry you?Are there things that particularly worry you?


Behavior Two:Behavior Two:

The clinician unintentionally links relief of The clinician unintentionally links relief of suffering with a demand upon the patient suffering with a demand upon the patient or family to accept limited lifespan; this or family to accept limited lifespan; this disrupts trustdisrupts trust


The clinician unintentionally links relief of suffering with a demand upon The clinician unintentionally links relief of suffering with a demand upon the patient or family to accept limited lifespan; this disrupts trust.the patient or family to accept limited lifespan; this disrupts trust.

The clinician waits for an incurable clinical The clinician waits for an incurable clinical event to occur to discuss palliative careevent to occur to discuss palliative care

I’m sorry, but there is nothing more we can I’m sorry, but there is nothing more we can do, leaving the patient with a feeling of do, leaving the patient with a feeling of abandonmentabandonment

Link treatment choice we provide as driven Link treatment choice we provide as driven by care rather than the patient’s prognosisby care rather than the patient’s prognosis


58 y/o male with widely metastatic 58 y/o male with widely metastatic adenocarcinoma of the lung, worsening adenocarcinoma of the lung, worsening despite three trials of chemotherapy. He despite three trials of chemotherapy. He is now admitted to the hospital for is now admitted to the hospital for treatment of post obstructive pneumonia. treatment of post obstructive pneumonia. The physician knows that Mr. A. still has The physician knows that Mr. A. still has hope that his cancer can be cured.hope that his cancer can be cured.


Clinician: Clinician: How are you feeling?How are you feeling?Pt:Pt: The breathing is pretty bad.The breathing is pretty bad.Clinician: Clinician: Yes, I can see that you’re suffering. We’re Yes, I can see that you’re suffering. We’re

going to treat that aggressively. (The going to treat that aggressively. (The clinician explains the use of oxygen, clinician explains the use of oxygen, antibiotics, chest PT, bronchodilators, antibiotics, chest PT, bronchodilators, morphine, and a bowel regimen.)morphine, and a bowel regimen.)

Pt: Pt: I’m glad. That should help the breathing.I’m glad. That should help the breathing.Clinician: Clinician: Yes, it should make you more comfortable.Yes, it should make you more comfortable.Pt: Pt: When can I start the chemotherapy again?When can I start the chemotherapy again?Clinician: Clinician: We’ll talk about that in a couple of days. We’ll talk about that in a couple of days.

Let’s Let’s get you feeling a bit better first.get you feeling a bit better first.


Behavior Three:Behavior Three:

The clinician misdiagnoses patients and The clinician misdiagnoses patients and families as being “in denial” of medical families as being “in denial” of medical reality, when they are actually reality, when they are actually experiencing normative grief and conflictexperiencing normative grief and conflict


The clinician misdiagnoses patients and families as being “in denial” of The clinician misdiagnoses patients and families as being “in denial” of medical reality, when they are actually experiencing normative medical reality, when they are actually experiencing normative grief and conflict.grief and conflict.

1.1. The reluctance of the patient or family to The reluctance of the patient or family to engage in the goals of care discussionengage in the goals of care discussion

2.2. Their request for “all life-sustaining Their request for “all life-sustaining measures”measures”

3.3. They are really saying, “I know that They are really saying, “I know that things are going poorly, but I just do not things are going poorly, but I just do not want death to occur. I need more time.”want death to occur. I need more time.”


Behavior Four:Behavior Four:

The clinician engages in a distracting and The clinician engages in a distracting and sometimes destructive debate with the sometimes destructive debate with the patient or family over the medical reality of patient or family over the medical reality of impending deathimpending death

For the family to forego treatment, they For the family to forego treatment, they must be able to FEEL that their decision is must be able to FEEL that their decision is a CARING thing to do.a CARING thing to do.


The clinician engages in a distracting and The clinician engages in a distracting and sometimes destructive debate with the patient or sometimes destructive debate with the patient or family over the medical reality of impending family over the medical reality of impending death.death.

Often due to staff’s repeated attempts to obtain Often due to staff’s repeated attempts to obtain a DNR ordera DNR order

Clinician sometimes argues by becoming Clinician sometimes argues by becoming emotionally disengaged from the patient or emotionally disengaged from the patient or familyfamily


For the family to forego treatment, they must be For the family to forego treatment, they must be able to FEEL that their decision is a CARING able to FEEL that their decision is a CARING

thing to do.thing to do.

““Your mother is very sick. Let’s talk Your mother is very sick. Let’s talk about what we can do to help about what we can do to help your mother.”your mother.”


Behavior Five:Behavior Five:

The clinician presents value-laden medical The clinician presents value-laden medical decisions without “right or wrong” answers decisions without “right or wrong” answers in a hypothetical, impersonal, and binary in a hypothetical, impersonal, and binary mannermanner


““If your heart stops beating or you stop If your heart stops beating or you stop breathing…..” calls for a generic “yes or breathing…..” calls for a generic “yes or no” decision.no” decision.

“…“…..what would you like for us to do” OR ..what would you like for us to do” OR “would you like us to code you or just keep “would you like us to code you or just keep you comfortable?” presumes personal you comfortable?” presumes personal choice without informed consent.choice without informed consent.


Behavior 6:Behavior 6:

All members of the health care team and the All members of the health care team and the appropriate members of the family are not appropriate members of the family are not informed of the patient’s goals and values informed of the patient’s goals and values and are not able to support the patient and are not able to support the patient during all stages of their journey.during all stages of their journey.

Imminently DyingImminently Dying

Resuscitation serves as a powerful and complex Resuscitation serves as a powerful and complex symbol: the most familiar “death ritual” in our symbol: the most familiar “death ritual” in our secular, medicalized society.secular, medicalized society.

Even if the treating team is confident that Even if the treating team is confident that resuscitation will be futile, it may provide the resuscitation will be futile, it may provide the patient or family with the symbolic assurance patient or family with the symbolic assurance that the team did not “give up” on the patient and that the team did not “give up” on the patient and that he or she died despite every effort being that he or she died despite every effort being made to save him or her.made to save him or her.

Palliative CarePalliative CareWhat’s Behind Your DoorWhat’s Behind Your Door

Incorporation into Existing ResourcesIncorporation into Existing ResourcesDisease Management TeamsDisease Management TeamsAlzheimer’s Association Alzheimer’s Association Cancer ServicesCancer ServicesHeart Failure ClinicHeart Failure ClinicAmerican Lung AssociationAmerican Lung AssociationAIDS SupportAIDS SupportSpecialty Clinics: ALS clinic, Hemodialysis UnitsSpecialty Clinics: ALS clinic, Hemodialysis UnitsMental HealthMental HealthPrison populationsPrison populationsUnderserved Communities: Poor, Medicaid, ESLUnderserved Communities: Poor, Medicaid, ESLPediatricsPediatricsMedical HomeMedical Home


Location of CareLocation of Care

HomeHome

Residential or Assisted Living Residential or Assisted Living CommunitiesCommunities

Skilled Nursing FacilitiesSkilled Nursing Facilities

Long Term Acute Care FacilitiesLong Term Acute Care Facilities

Outpatient ClinicsOutpatient Clinics


Provider of Palliative ServicesProvider of Palliative Services

HospiceHospice

Independent ProviderIndependent Provider

Health Care SystemHealth Care System


EducationEducationAmerican Association of Hospice American Association of Hospice

and Palliative Medicineand Palliative MedicineCenter to Advance Palliative CareCenter to Advance Palliative CareCarolinas Center for End of Life CareCarolinas Center for End of Life CareHospice or palliative providersHospice or palliative providers

ResourcesResourcesFast Facts/EPERC (End of Life Palliative Education Fast Facts/EPERC (End of Life Palliative Education

Resource Center)Resource Center)Primer of Palliative Care/UNIPAC Series (AAHPM)Primer of Palliative Care/UNIPAC Series (AAHPM)Blogs: Pallimed/GeripalBlogs: Pallimed/Geripal

ReferencesReferencesDownar J, Hawryluck M. What Should We Say When Discussing “Code Status” Downar J, Hawryluck M. What Should We Say When Discussing “Code Status”

and Life Support with a Patient? J of Pall Med 2010; 13: 185-195.and Life Support with a Patient? J of Pall Med 2010; 13: 185-195.

Sudore RL, Fried TR. Redefining the “Planning” in Advance Care Planning: Sudore RL, Fried TR. Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making. Ann Intern Med 2010; 153: 256-Preparing for End-of-Life Decision Making. Ann Intern Med 2010; 153: 256-261.261.

Taylor RM, Gustin JL, Wells-DiGregorio SM. Improving Do-Not-Resuscitate Taylor RM, Gustin JL, Wells-DiGregorio SM. Improving Do-Not-Resuscitate Discussion: A Framework for Physicians. J Supp Oncology 2010; 8: 42-44.Discussion: A Framework for Physicians. J Supp Oncology 2010; 8: 42-44.

Hickman SE et al. J Am Geriatr Soc. 2010; 58[7]:1241-1248.Hickman SE et al. J Am Geriatr Soc. 2010; 58[7]:1241-1248.

Hammes, B. Advance Care Planning: Successes and Failures. Presentation, Hammes, B. Advance Care Planning: Successes and Failures. Presentation, Forsyth Medical Center, March 2010.Forsyth Medical Center, March 2010.


What’s on your Mind?What’s on your Mind?

Charles S Stinson, MDCharles S Stinson, MD

[email protected]

336 718-7041336 718-7041

palliative care how to open the door what is on the other side charles s. stinson, md medical...

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