Advance Care Planning

Dr Wu Huei Yaw Dept of Palliative Medicine Tan Tock Seng Hospital Singapore

A story with a sad ending

Mdm M, 78 year-old Indian lady of Catholic faith Widowed with 2 married daughters and an unmarried son Lives with son and a helper who cares for her Diagnosed with end-stage heart failure and had repeated hospitalizations for heart failure Had an AICD (automatic implantable cardioverterdefibrillator) inserted few years ago Also on intravenous dobutamine infusion to support her blood pressure

My encounter with patient

Referred to Palliative Care Service in 2007 Verbalized her wish to stop her dobutamine infusion Perceived her quality of life as poor and did not want to prolong it if there was no chance of recovery

Struggling with life and death decisions

Multiple hospitalizations between 2007 and 2008 for recurrent heart failure resulting in shortness of breath and generalized swelling of her limbs
Discussion with family initiated when she became too ill regarding deactivation of her AICD Daughters felt that patient was suffering and were agreeable Son was not accepting; refused despite several meetings to explain the rationale Cardiologist in-charge not keen to go against sons decision as latter had previously accused doctors of not doing their best to save patient

Her last days

Patient subsequently transferred to an inpatient hospice for terminal care Continued to deteriorate and was drowsy most of the time Hospice staff continued to explore with son on the issue of deactivating the AICD; he was adamant and stood by his decision Difference in opinion with mothers care led to conflict between siblings

AICD went off many times during patients last days in hospice causing unnecessary pain and suffering
Mdm M finally passed away after about 1 months stay in the hospice

Food for thought

Would the outcome have been different if Mdm M had previously made known her wishes regarding her medical treatment/care?

Would it have made a difference if she had appointed a healthcare proxy (one who knows her wishes and will honor them) to make decisions on her behalf in the event that she became mentally incapacitated?

Some Facts about End of Life Care

Most of us die after experiencing a chronic, progressive illness. Approximately 80% of deaths will occur in some type of health organization eg. hospitals, nursing homes.

When the time comes to make important EOL decisions, approximately 50% of us are incapable of participating in those decisions.
When doctors are uncertain about what decisions to make, the default is to treat. If health professionals or loved ones have not spoken with a patient about EOL issues, they cannot reliably predict what the patient would have chosen and they find the decision making responsibility burdensome and stressful.
-Field & Cassel, 1997

SUPPORT Trial

Designed to improve care of patients near the end of life 4-year study conducted in 5 US teaching hospitals 9105 seriously ill patients

Results a. Nearly one half (49%) of the patients who indicated they wanted cardiopulmonary resuscitation (CPR) withheld did not have do-not-resuscitate (DNR) orders written in their medical charts during that hospitalization. b. Almost one third of the patients preferred that CPR be withheld, less than one half of the physicians were aware of their patients' preferences.

SUPPORT Trial
Results
c.

Among patients who died, almost one half (46%) received mechanical ventilation within three days of death, and more than one third (38%) spent at least 10 days in an intensive care unit (ICU). 50% of the conscious patients who died in the hospital were reported to have moderate to severe pain at least one half of the time. Decision-making capacity for many of these patients was compromised.

d.

What are the stark findings of the SUPPORT study?

Doctors treating patients who were very ill were not aware of the patients wishes regarding CPR and active resuscitation. Patients received aggressive medical treatment which were futile and probably increased their suffering in their last days.

If you are in the hospital and get CPR, you have a

7% 17%

30%
50%

chance of leaving the hospital alive.

If you are in the hospital and get CPR, you have a

7% 17%

30%
50%

chance of leaving the hospital alive.

Advance Care Planning (ACP)

A voluntary process of discussion about future care between an individual, his/her care providers and often, his/her significant others; and developing a valid expression of the individuals wishes regarding future medical care.
Important issues concerning the patient's questions, fears and values are explored. As the issues are uncovered, the information can be translated into a plan of action, called the advance directive.

Ethics of ACP

Based on the doctrine of informed consent

Adult patients with decision-making capacity have a right to or refuse medical treatment recommended by the physician Promotes patient-centred care by enhancing communication and respecting ones right to self-determination

Advance Directive

The health care power of attorney, or health care proxy, is a document by which the patient appoints a trusted person to make decisions about his or her medical care if he or she cannot make those decisions.
A living will is a written form of advance directive in which the patient's wishes regarding the administration of medical treatment are delineated in case the patient becomes unable to communicate his or her wishes.

Advance Directive and ACP

ACP
AD

Statement of Wishes and Preferences

A range of written and/or recorded oral expressions, by which one can tell people about ones wishes or preferences in relation to future treatment and care, or explain ones feelings, beliefs and values that govern how one makes decisions. May cover medical and non-medical matters. Not legally binding but should be used when determining ones best interests in the event one loses the capacity to make those decisions.

Five Wishes

Which person you want to make health care decisions for you when you cant make them The kind of medical treatment you want or dont want How comfortable you want to be How you want people to treat you What you want your loved ones to know

Goals of ACP

Ensure that clinical care is in keeping with the patient's preferences when the patient has become incapable of decision making. Improve the health care decision-making process

Facilitate a shared decision-making process among the patient, physician and proxy, guided by the patient's preferences. Allow the proxy to speak on behalf of the patient. Respond with measured flexibility to unforeseen clinical situations. Provide education regarding the issues that surround death and dying.

Improve patient outcome

Improve the patient's well-being by reducing the frequency of over-treatment and under-treatment.

Reduce the patient's concerns regarding the possible burden placed on family and significant other people.

Understanding the treatment preferences of seriously ill patients (Fried et al. NEJM Apr 2002)
-

226 pts with life limiting illnesses (cancer, heart failure and COPD) Questionnaire about treatment preferences with low adverse outcome vs high adverse outcomes Burden of treatment (prolonged hospital stay, extensive investigations, invasive procedures)

Results: - Low burden adverse outcomes: 98.7% opted for treatment - High burden adverse outcomes: 25.6% (functional impairment) and 11.2% (cognitive impairment)

Initiating ACP (1)

Choose an appropriate time for discussion

- Not the 1st consultation - Rapport established - Can be done after recent major hospitalisation or after recurrent hospitalisations

Reassure patient this conversation is part of routine, quality care

- At some point I speak to all my patients about their future medical care

Initiating ACP (2)

Understanding their values

- Explore understanding of own state of health

and prognosis - Explore their fears and expectations - What gives your life meaning at this point

Not be a quick response trigger

- What do you want when your heart stops or if you are in coma - May lead to a hurried and wrong decision

Initiating ACP (3)

Discuss specific situations that will most likely arise, including issues of burden of care and time-limited trials
- Role of drainage of recurrent pleural effusion or ascites - Role of oral antibiotics vs intravenous antibiotics for the next chest infection (Advanced Ca Lung) - Role of the feeding tube in anorexia / cachexia of cancer - Role of morphine in symptom relief - Role of CPR

Not all situations can be pre-empted

- Room for proxy

Does ACP improve EOL care?

Outcomes of Study

Patients end of life wishes were known and respected EOL wishes in the intervention group more likely to be known and followed through than control group (86% vs 30%; p<0.001)

Patient and family satisfaction level with hospital stay and levels of stress, anxiety and depression in relatives of patients who died Family members of patients who died had significantly less stress, anxiety and depression in the intervention group
Patient and family satisfaction higher in intervention group

Challenges to effective ACP

Low public awareness Refusal to talk/discomfort in talking about illness or death (fear, taboo) Conflict of values within the family Healthcare providers concerns about the potential conflicts and legal implications Lack of training and communication skills to facilitate discussion Insufficient resources to support the care desired Information flow between different health care settings

The National Healthcare Group Advance Care Programme (NHG ACP)

An end-of-life care programme for advanced COPD, end-stage heart failure & end-stage renal failure

Objectives
1)

Integrate palliative care into curative care practices early in the disease trajectory Help patients manage & control pain and symptoms at home

2)

3)
4)

Support patients care at home

Improve patients quality of life through the relief the physical, emotional, social and spiritual discomforts in the last phases of life Reduce the need for re-hospitalizations and ED visits for management of exacerbations

5)

Emphases of Programme
3 Es: Early identification of patients at the end of life Empowerment of patient and family through education and ACP Engagement of patient/family and intervention to prevent crises and assistance in deterioration

Guiding Principles

Respect and enable patients to die with dignity and in a setting of their own choice
Respect for patient's and family's wishes

Aging with Dignitys 5 Wishes for: -The person I want to make care decisions for me when I cant; -Kind of treatment I want or dont want; -How comfortable I want to be; -How I want people to treat me; and -What I want my loved ones to know

Roles of Personnel involved

Primary Physicians - To identify patients who meet the inclusion criteria - Continue to serve as the primary physician if the patient is readmitted to the hospital - Initiate end of life care and ACP discussion - Introduce the EOL programme to patient and offer recruitment

Roles of Personnel involved

Case Managers of respective chronic disease - To assist the primary physicians in carrying out the duties mentioned - Liaise with the EOL programme nurse clinicians

Palliative Care Physicians - To provide leadership, education and mentorship of the home care team - To screen through referrals - To provide palliative care support when patient is hospitalized and ensure continuity of care between hospital and home care team - To monitor the outcome measures - To report to project director(s)

Roles of Personnel involved

Medical Officers and Nurse Clinicians -make home visits in management of patients -assist in education of patients and family -participate in audit of care and multidisciplinary team meetings -join Hospice team in call rota for after-hours cover
Medical Social Worker/ Counsellors -identify and assist in psychosocial and spiritual issues -assist in case management -assist in ACP -bereavement support

Advance Care Planning (May Dec 2008)

Advance Care Planning
Completed Not done Not ready Not applicable N
(Total=101)

%
80.2% 0% 19.8% 0%

81 0 20 0

Preferred Place of Care

(May Dec 2008)
Preferred place of care Explored (N=81) Yes No Not ready N 75 0 6 % 92.6% 0% 7.4%

Is Home (N=75)

Yes No

70 3

87.5% 3.8%

Unsure

2.5%

Preferred Place of Death

(May Dec 2008)
Preferred place of death Explored (N=81) Yes No Not ready N 66 8 7 % 81.5% 9.9% 8.6%

Is (N=66)

Home Hospital

56 2

84.9% 3.0%

Unsure

12.1%

Preferred Main Caregiver

(May Dec 2008)
Preferred main caregiver Explored (N=81) Yes No Not ready N 81 0 0 % 100% 0% 0%

Is (N=81)

Immediate family member Self Domestic helper

58 2 20

71.6% 2.5% 24.7%

Others

1.2%

Preferred Main Decision-maker

(May Dec 2008)
Preferred main decision-maker
Explored (N=81) Yes No Not ready

N
79 2 0

%
97.5% 2.5% 0%

Is (N=79)

Immediate family member Self

78 1

98.7% 1.3%

Others

0%

Do Not Resuscitate Order

(May Dec 2008)
Do not resuscitate order Explored (N=81) Yes N 28 % 34.6%

No
Not ready/suitable

27
26

33.3%
32.1%

Is (N=28)

Yes No Unsure

22 2 4

78.6% 7.1% 14.3%

Place of Death of Patients under Advance Care Programme (May Dec 2008), COPD & Heart Failure Programmes (Jan Dec 2007)
80.0% 73.5% 70.0% 69.6% 66.7%
Advance Care Programme

60.0%
COPD Programme (2007)

50.0%

Heart Failure Programme (2007)

40.0%

30.0% 24.8% 20.0%

28.6%

10.0%

5.9%

4.8% 0.0% 1.6%

0.0%

Home

Hospital

Hospice

Challenges faced in ACP discussion

Language barrier Patient/family emotionally/mentally not ready to discuss

Portability between different care settings

Inadequate medical knowledge to initiate specific discussion eg. complications of mechanical ventilation Primary physician not initiating ACP discussion

Thank You