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Goals Of Care & Advance Care Planning

14 min read

Description #

This unit provides guidance and practical recommendations for the critical conversations with patients & families encompassing Goals of Care, including establishing DNR/No CPR orders and Advance Care Planning.

Learning Objectives #

  • To develop confidence in preparing for and facilitating these conversations
  • To understand the important elements of the Goals of Care conversation
  • To know the relationship between Goals of Care and Advance Care Planning
  • To recognize the importance of these planning conversations

Introduction #

The reality is that all of our patients, and all of us who work in health care, will die.

We cannot prevent our patients from dying – we can prolong life, and perhaps redirect their death to be the result of a different complication, but death will come. If we wish to offer our patients the best quality of life possible until the end of their life, and if we wish to offer them the best quality of death possible, we must appropriately initiate Goals of Care conversations and engage in them effectively. By developing these skills and being courageous in initiating these discussions we contribute to changing the culture around the acceptability of these conversations.

Talking with patients and their loved ones about Goals of Care that are clinically appropriate and that reflect their wishes as much as possible has the potential to: 

  • improve quality of end of life and ultimately of death 
  • improve patient and family’s satisfaction with care1
  • reduce stress for family and loved ones2
  • reduce unwanted and ineffective aggressive medical management at the end of life3

Although they overlap, the conversations about Goals of Care may be distinguished from those about advance care planning:

  • Goals of Care is a treatment plan, including medical orders or designations, arrived through conversations with patients, or in the event of their incapacity, with their substitute decision maker who considers the patient’s previously expressed advance care planning wishes. The aim is to establish a treatment plan that is medically indicated, clear and reflects the patient’s wishes, values and beliefs applicable to the circumstances.

Advance care planning (ACP) is the process in which a capable adult considers their wishes, values and beliefs about their future health care in the event that they become incapable of communicating the treatment they would consent to or refuse. The principle behind ACP is of “Nothing about me without me… even if I could not speak for myself”.  

Production of this module was made possible with contributions from:

The BC Health Education Foundation

Integrated Primary & Community Care 

Goals of Care #

View this 17:36 discussion about the Goals of Care conversation featuring (left to right)

Dr. Iain MackieDr. Amanda HillDr. David R. Kuhl

Internal MedicineGeriatric MedicineAuthor: What Dying People Want

Goals of Care are treatment plans, including medical orders or designations, arrived through conversations with patients, or in the event of their incapacity, with their substitute decision maker who considers the patient’s previously expressed advance care planning wishes. The aim is to establish a treatment plan that is medically indicated, clear and reflects the patient’s wishes, values and beliefs applicable to the circumstances.

Considerations in setting appropriate Goals of Care

  • Aim to understand the patient’s quality of life prior to this admission. Give patient/family opportunity to say there has not been quality of life and that it is okay to stop intervening in the natural process.
  • If the patient lacks capability, try to open the conversation with family and friends about what they know the person would have preferred. Did they express any prior wishes about future care? What was important to their loved one? What made their life meaningful or worth living? Did they have experiences with end of life decisions for other family members or friends?
  • As physicians, we should make recommendations based on our clinical knowledge and what is an appropriate treatment plan for this patient, given the expected prognosis.
  • There is no ethical or legal obligation to propose a treatment plan that is not medically indicated. It is the healthcare provider’s responsibility to determine the healthcare plan that is indicated and it is not appropriate to take direction on what is indicated from the patient or substitute decision maker (SDM). Deciding what treatments are indicated is a matter of professional responsibility. 4 This is a product of experience: it is sometimes difficult to say, this is my recommendation.
  • At times there are real choices to make around treatment options. When there are options, be prepared to listen to what the patient/family wants and be open to accepting decisions that might not be your personal choice. At times choices are made in order to make the patient’s death a less traumatic experience for the family, such as an intervention that may not have significant benefit to the patient but does have significance for the family and their long-term grief.
  • It is important to engage confidently with your medical information, and to be able to separate what are consent decisions from what are treatment recommendations/what we are able to offer. We should be asking what the patient/family want within the context of proposed, medically appropriate treatments. Don’t describe treatment that you are not willing to offer.
  • The patient/family may not want to take on the responsibility of this decision and may be looking for clear direction from the clinician. On the other hand, there may be times of disagreement between the physician and the patient/family about what is medically appropriate. These situations may require the physician to request a second opinion, or a consultation/opinion from other services such as palliative or critical care. Occasionally tensions escalate and require support from social work, ethics or another service to help reduce tensions and help mediate the best outcome.

Questions to consider prior to the Goals of Care conversation

  • What are the circumstances of this conversation – admission to hospital? A pivotal point in your care of the patient?
  • At what point is the patient in their illness?
  • Is this a conversation in which there is an urgency to establish medical orders and urgent practical issues need to be considered, or one in which time can be taken to discuss the patients overall condition, prognosis and wishes? 5
  • What topics need to be addressed in this conversation?
  • Do you and the family need more information about prognosis prior to having this conversation?
  • Is this the first time the patient has been engaged in a conversation about their prognosis or Goals of Care plan?
  • Has the patient previously expressed any wishes for future care in an advance care plan?
  • How many times have you met/had a conversation with this patient?
  • What do you know about the patient’s social situation – their family, as they define it, or lack of family, or ways they may feel marginalized or stigmatized?5
  • Consider/ask who should be part of this conversation: if the patient lacks capability, who is the substitute decision maker? Has one previously been appointed? Are there other family members/friends who should be present? If they are not available for this conversation, should they be invited to a follow-up?
  • Are there other health care providers with whom this patient may have had this conversation who you should consult or who could participate in the conversation (eg Family Physician or Specialist)?
  • Do you feel confident and prepared for the conversation? Should you ask for guidance or support? 5

Set the stage with the patient/family

  • If there is more than one health care provider, consider who is most appropriate to lead the discussion and who is to follow up. Consider who has the best rapport with the patient/family and who can most likely provide answers to the questions that may be asked.
  • Near the beginning of the conversation review the medical issues, current situation, and the whole process of care to this point. If the patient/family is new to the provider, ask if they have had previous conversations with providers.
  • Do they know what happens with CPR or other treatment being discussed? Provide appropriate education in understandable words.
  • It is important to ensure good communication amongst all health care providers involved so that everyone is aware of what conversation have taken place. Be clear about a plan, and about who will follow up with the patient/family. Clearly document on the chart.
  • There are variations in the readiness of patients/families to engage in these conversations – health care providers should develop skills in evaluating the readiness and level of discussion in which a patient/family is able to engage. 5
  • The limits of care should be declared, depending on the patient’s situation, while emphasizing other potential – the potential for comfort, for quality of time with family/loved ones and other new goals for hope. 6
  • To change the target of care from cure to comfort may itself be a hopeful act. Sometimes the patient is the first to realize the need to shift the target of hope and convinces the doctor and family to abandon active treatment. 6
  • Often this is more than one conversation, it is a series of conversations. If this is possible, consider how you will communicate with the patient/family over time, and the objective of this particular conversation.

Practical suggestions about communication

Patients feel better about these conversations with doctors who are trusted, and when that relationship has developed over time. 1 In acute care, where the patient may not be previously known, we have to find other ways to develop trust:

  • Allow sufficient time for the conversation & try to ensure you won’t be interrupted – turn off your pager if possible.
  • Sit if the patient is sitting or lying down. Be aware of your body language.
  • Use language that is clear and understandable.
  • Try to be open and person-centered.6
  • Be as honest, clear and sensitive as possible.5
  • Try to project caring and openness in balance with objectivity and professionalism.
  • Be compassionate, and responsive to the emotional needs of the patient/family. 5
  • Try to use empathy by attempting to understand how the patient/family may be feeling in this situation without then assuming that what you would want is what the patient or family would want.
  • Actively listen – allow the patient/family to express their emotions and their concerns.
  • Provide comfort, using personalization or touch if appropriate. 5
  • Look for ways to make the patient feel unique, special, worthy of your time and attention. 5
  • Do not underestimate the power of your interaction with your patient: ‘ Interaction with the patient and their family member(s) is itself a treatment’ 6
  • Look for ways to enhance realistic hope: ‘Emphasize what can be done, and if there is little treatment to offer, emphasize comfort, pain control and the care that will be provided. Hope is an intangible… which may be ‘administered through human interaction. Once you are involved in a patient’s illness experience you become important in that patient’s life whether you want to be or not. The patient looks to you for hope’. 6
  • Don’t assume the patient/family understands; if in doubt, ask: ‘ It is a useful guiding principle to assume that only part of what you have said has been heard. Then at the end of sharing you can ask if they have any questions and ask them to summarize what they have heard – this may allow you to identify & then clarify any misunderstandings or misinterpretations.’ 6
  • While there are cultural differences in openness to these conversation and differing cultural attitudes toward death and dying, there is also great variation within any culture. It is important not to make assumptions about how a person or family will respond.
  • Other factors in addition to ethnicity – such as gender, sexual orientation, religion, family of origin and/or past personal experiences – may also have a strong influence on preferences or ability to engage in these conversations. Some people may be comfortable considering treatment or end of life preferences, while for others this is not easy to contemplate or speak about. One of the most important approaches to bridging reluctance to engage in the conversation is a respectful approach and working to establish trust with the patient and family. If in doubt, acknowledge your uncertainty about the patient’s perspective and experience, and respectfully ask how best you can help meet the patient/family’s needs.2
  • Be aware of your own emotions, your own comfort (or discomfort) in having these conversations. Some of us work frequently in EOL care and have these conversations often, for others these may be new or infrequent conversations. 5

When medical orders are needed urgently

There are occasions when the DNR or No CPR orders may need to be established urgently and there is not enough time (&/or it is not the appropriate time) to have a comprehensive Goals of Care conversation. When orders are needed urgently, strive to:

  • Avoid traumatizing by using good communication skills, being sensitive, using touch when appropriate, being aware of what you say and how you say it and making best use of the time available for the conversation.7
  • Provide clarity about your clinical recommendation in the situation
  • When able, clarify the patient’s prognosis
  • Clarify that you are committed to providing care that will benefit the patient, but you believe it is important to not provide care that will not be beneficial or that will cause harm
  • Describe the care that will be provided if the No CPR order is written
  • Emphasize that DNR/No CPR does not mean NO care, but rather what is treatable will be treated such as dehydration, infection, pain, etc.

View this 11:03 discussion about the urgent DNR/No CPR conversation featuring (left to right)

Dr. Alexandros Alexiadis Dr. Lyne FiliatraultDr. Vinay Dhingra

Palliative Care Consultant Emergency MedicineInternal Medicine & Critical Care

Additional resources on Goals of Care

Dr Atul Gawande outlines questions to consider in conversation with a patient facing end of life in this 3 minute video. The questions are:

  • Does the patient know his/her prognosis?
  • What are the patient’s goals? What does he/she want to do with the time that is left?
  • What are the patient’s fears about what is to come?
  • What are the trade-offs that the patient is willing to make?
  • How much suffering is the patient willing to tolerate in order to achieve their goals?

Advance care planning #

View this 13:39 overview of Advance Care Planning by

Wallace A. Robinson, MSW, RSW

Advance Care Planning Educator

Advance care planning (ACP) is the process in which a capable adult considers their wishes, values and beliefs about their future health care in the event that they become incapable of communicating the treatment they would consent to or refuse. The principle behind ACP is of “Nothing about me without me… even if I could not speak for myself”.

  • Encouraging advance care planning with our patients may be as simple as asking: If you became unable to speak for yourself, who would you want to speak on your behalf? This is an important, and empowering first question. It gives some control back to the patient. Our follow up question may be: Have you spoken with that person about your wishes, or about the kind of treatment you would want? Clarifying what makes your life meaningful and worth living may help inform your decision maker as to what treatment you would accept or refuse if you became incapacitated. 
  • ACP can help patients achieve a sense of personal empowerment and hope9 & can be beneficial to family members by providing guidance and reducing burden when difficult decisions are needed.2,8 VCH/PHC policy encourages us to ASK patients if they have engaged in advance care planning, and if they have created any ACP documents that they would like to share with us. It also sets out the process for how we store and receive this document.

REFERENCES

1. Clayton JM, Hancock KM, Butow PN, Tattersall MHN, Currow DC. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 2007; 186 (12) 77 

2. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomized controlled trial. BMJ Online First 2010.

3. Heyland DK, Barwich D, Pichora D, Dodek P, Lamontagne F, You J, Tayler C, Porterfield P, Sinuff T, Simon J. Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning. JAMA Intern Med; Published Online April 1, 2013. 

4. Sibbald RW, Chidwick P, Handleman M, Cooper AB. Checklist to Meet Ethical and Legal Obligations to Critically Ill Patients at the End of Life. Longwoods.com Healthcare Quarterly; 14(4) November 2011. 

5. Beavan J, Fowler C, Russell S. Communication skills and Advance Care Planning. In: Advance Care Planning in End of Life Care. Thomas K, Lobo B. Eds: Oxford University Press; 2011. 

6. Jevne R. Enhancing Hope in the Chronically Ill. Humane Medicine; Vol 9, No 2 April 1993. 

7. Kuhl DR. What Dying People Want. Anchor Canada, 2003. 

8. Seymour J. Gott M, Bellamy G, Ahmedzai SH, Clark D. Planning for the end of life: the views of older people about advance care statements. Social Science & Medicine 59 (2004) 57-68. 

9. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ Online First, 21 September 2006.

The DNR/No CPR conversation Video #

Additional resources #