DEVELOPMENT OF A CARE GUIDE FOR THE PALLIATIVE TRAJECTORY Authors: Anette Duarte1, Dröfn Birgisdottir1,3, Birgit H Rasmussen1,2, Bengt Sallerfors1, Carl Johan Fürst1,3

1The Institute for Palliative Care, Lund University and Region Skåne, Sweden, 2Department of Clinical Sciences, Lund University, Sweden 3The Department of Health Care Sciences, Lund University, Sweden.

WHY DID WE DO ITIn Sweden, a request from health care professionals, has been put forth for a more structured and personalized support for patients with palliative care needs through-out the palliative trajectory. Today such a support exists only for the dying patient.

WHAT WAS THE AIMTo develop a person-centered structured care guide for adult patients with palliative care needs throughout the palliative trajectory, regardless of age, diagnosis and care facility.

WHAT DID WE DODevelopment of the care guide began in 2014 and follows the Medical Research Council framework. It is based on research, collected clinical experience, expertise of patients and families and a multidisciplinary advisory committee as well as regulatory documents issued by the Swedish health care authorities. Feasibility and revi-sion of the guide was accomplished through three sub-sequent pilot studies in about 50 municipal, acute and specialized palliative care settings. Intertwined with the pilot studies, feasibility and evaluation of the guide involved interviews with patients and family, focus groups with and written comments from the staff and review of medical records.

WHAT DID WE FINDThe results showed that the care guide provides a clear and structured support and can be used either as sup-port to assure the care given is based on the principles of good palliative care or in addition as a documenta-tion record from early to late palliative care, including end-of-life and after death care. The guide consists of three parts, including assessments and suggestions for interventions related to the most common needs and problems at the different stages in the palliative trajectory.

Transition topalliative care

ASSESSMENT OFPALLIATIVE CARE NEEDS

INITIATING PALLIATIVECARE

EXPANDED GUIDELINEFOR PALLIATIVE CARE

AFTER DEATH

Months up to a yearleft in life

CARE INTERVENTIONSFOR PALLIATIVE CARE

CARE INTERVENTIONSFOR THE DYING PATIENT

The patient is dyingThe patient may have a few days up to a week left in life

The patienthas died

PCG an Overview

PART PART PART PARTD

PraktiskhandledningVID ANVÄNDANDET AV NATIONELL

VÅRDPLAN FÖR PALLIATIV VÅRD-NVP

InstruktionerOCH REKOMMENDATIONER

VID INFÖRANDE AV NATIONELL

VÅRDPLAN FÖR PALLIATIV VÅRD-NVPIntroduktionTILL NATIONELL VÅRDPLAN

FÖR PALLIATIV VÅRD-NVP

ASSESSMENT OF PALLIATIVE CARE NEEDS

The assessment can be used for patients who are in transition from curative interventions to being in need of more palliative interventions whose main goal is to achieve the best possible quality of life through support and symptom relief.

It is suitable for organisations in emergency care, primary care, municipal care homes, home care, and specialised palliative care.

Cancer (stage III/IV)

COPD (stage III/IV)

Heart failure (stage III/IV)

Neurological disease (e.g. stroke, ALS, MS, Parkinson's)

Liver failure (degree III/IV)

Renal failure (stage IV/V)

Dementia (moderate to severe phase)

Patient with multiple diseases and severe organ failure

Progressive disease development

Progressive functional disability

Substantial agitation, anxiety, stress in patient or relative(s) caused by the condition/care

Progressive weight loss

Repeated unplanned emergency visits due to chronic disease

OBJECTIVE OF NCP PART 1

To identify the patient's palliative care needs to ensure that the patient and their relatives are given the opportunity to plan, prepare and prioritise what they consider important and meaningful since the patient has limited time left.

DISEASES WITH A LIKELY NEED FOR PALLIATIVE CARE:

DISEASE PROGRESSION THAT MAY INDICATE NEED FOR PALLIATIVE CARE

HOW IS THE PATIENT DOING SYMPTOMS AND STATUS 02

FUNCTION IN DAILY LIFE 02

CONVERSATIONS AND ASSESSMENTSBREAKPOINT CONVERSATION 02

ASSESSMENT OF CARE NEEDS 03

SOCIAL CONTEXTRELATIVE(S) 02

RELATED CHILDREN 02

PLANNINGCOORDINATION 03

CONSENT 03

SIGNATURES AND PRINTED NAMES 03

ASSESSMENT OF PALLIATIVE CARE NEEDS NCP PART 1

Version 1.0|Valid through 31/03/2017This is a patient record. palluc.se

ASSESSMENT OF PALLIATIVE CARE NEEDS

DIGNIFIED DEATH NOTES ABOUT THE DEATH 01

CARE AFTER DEATH 02

WHAT IS IMPORTANT NOWSPECIAL REQUESTS 02

SUPPORT TO RELATIVE(S)CONTACT WITH RELATIVE(S) 01

RELATIVE(S) 03

RELATED CHILDREN 04

PRACTICAL ADMINISTRATIONPROCEDURES AFTER DEATH 02

RETRIEVAL OF THE REMAINS 03

SIGNATURES AND PRINTED NAMES 04

NCP PART 3AFTER DEATH

AFTER DEATH

An essential part of palliative care is taking care of the deceased with respect and dignity, and giving support to relatives after the individual's death.

This part presents suggestions for handling the remains and provides structure for support and dialogue with relatives.

PALLIATIVE CARE AFTER DEATH

Palliative care continues even after death by taking care of the deceased and providing support to relatives in the grieving process.

Most people get the support they need to deal with grief from family and friends. Others need more support and may benefit from talking to someone who cared for the deceased in their final days. Some need additional support from a social welfare officer, psychologist, or spiritual leader.

Each unit that has cared for a person in their final stages of life should have a routine for offering grief counselling to relatives.

With a comprehensive overall picture – which is unique to each patient – care with the support of the NCP can be carried out in the best possible manner.

OBJECTIVE OF NCP PART 3

That the dignity and integrity of the deceased are respected and the relative(s) feel they have been given proper respect and support.

1Version 1.0|Valid through 31/03/2017This is a patient record. palluc.se Pa

tient

ID:

NCP PART 2DEXPANDED DECISION SUPPORT FOR PALLIATIVE CARE, DAYS TO A FEW WEEKS LEFT TO LIVE

Started Date:_________________

Discontinued (Patient's condition improved) Date:_________________

Resumed Date:_________________

Ended (Patient is deceased) Date:_________________

Deceased's remains are handled as specified in NCP part 3 Date:_________________

Progressive disease development

Progressive functional disability

The deteriorating state is expected

Treatable conditions have been considered

The patient is believed to have a few days to a few weeks left to live

Life-prolonging treatment not indicated

n SIGNS A PATIENT MAY BE DYING

Patient is bedridden Patient sleeps most of the day

Patient has difficulty swallowing Patient can only drink small amounts of fluid

Patient is continuously in a lowered state of consciousness Impaired circulation/breathing

Other

Date:_________________(medical|ethical|culture|patient's will)

Date:

Patient's name:

Department|Care unit:

Main diagnosis|secondary diagnoses

Personal identity number:

sign doctor|nurse •

sign doctor •

sign doctor •

sign doctor •

sign doctor •

sign

sign

n CARE OF DYING PERSON

n ASSESSMENT WHETHER THE PATIENT IS DYING

yes

yes

yes

yes

yes

yes

no

no

no

no

no

no

A GUIDELINE FOR INITIATING PALLIATIVE CARE

HOW IS THE PATIENT DOING SYMPTOMS AND STATUS 02

FUNCTION IN DAILY LIFE 02

DISCUSSIONS AND ASSESSMENTSBREAKPOINT DISCUSSION 03

MEDICAL DECISIONS 04

INFORMATION 07

WHAT IS IMPORTANT NOWWISHES AND PRIORITIES 05

WHAT DOES THE PATIENT WANT TO KNOW AND DO

UNDERSTANDING 04

INVOLVEMENT 06

SOCIAL CONTEXTRELATIVE(S) 06

RELATED CHILDREN 07

PLANNINGCOORDINATION 08

CARE INTERVENTIONS 08

UPDATE OF DECISION SUPPORT 09

CONSENT 09

SIGNATURES AND PRINTED NAMES 09

DECISION SUPPORT FOR PALLIATIVE CARE

The decision support offers person-centred support to identify, assess, and address the patient's palliative needs, wishes, and priorities.

Through use of NCP PART 2, healthcare effortscan be quality assured for patients approaching the end of life. The content addresses the issues and areas that are important to decide on, regardless of whether the time left is one week or one year.

The decision support can be used within both the medical services system and municipal care and welfare organisations, regardless of the patient's age and diagnosis.

PURPOSE OF NCP

Assure the quality of care

Provide support in converting theoretical knowledge of palliative care into clinical practice

Increase security and quality of life for both the patient and their relatives by identifying, addressing, following up, and documenting needs in a structured manner

Increase security for staff by calling attention to important aspects

Increase the opportunity for joint planning and involvement

Create a shared picture of needs and possibilities

OBJECTIVES OF NCP PART 2

To meet the patient's physical, mental, social, and spiritual needs with the aim of the patient living with the greatest possible well-being. To ensure that the patient and their relatives are given the opportunity to prioritise what they consider important and meaningful since the patient has limited time left.

2

NCP PART 2

contact informationanette.duarte@skane.se

www.palluc.se