The Case for Advance Care Planning. Advance care planning is a series of conversations that a patient and you, their care provider, have about end of life wishes. These can be captured into an advance care plan, that may include both a selection of a health care agent or surrogate, and a living will with specific guidance on desires for interventions and level of care. These two together can form an Advanced Directive. This is a legal document that has no expiration date. It is intended to provide guidance to the named or default healthcare agent on wishes of the individual for their care. Once legally completed, it is transportable across states
Why is counseling your patient on Advance Care Planning so important? Data are compelling that our population is aging, and the types and trajectories of death are changing. Whereas relatively acute episodes of untreatable disease or trauma used to be the norm which led to shortened and abrupt trajectory to death, chronic diseases, particularly cardiovascular and pulmonary disease, have become the predominant causes of death. Seven out of ten Americans die of a chronic disease. These common trajectory now is a prolonged, downhill course with occasional decompensations and recovery until a decompensation happens from which there isn’t recovery. Patients now live longer with serious illness and disability, making their life and dying decisions so important not only for the quality of their remaining lives, but also for more rationale use of healthcare resources. Healthcare costs skyrocket in the last two years of life, accounting for almost 30% of healthcare expenditures. With the aging of the population, this is only going to increase. Although the Medicare hospice benefit provides for care in the last six months of life, the average duration in hospice in only a week. A California Health Care Foundation survey found that only 20% of Californians have talked about their end of life wishes with their doctors.
Advance care planning increases patient satisfaction and fulfillment of their healthcare wishes more often but also reduces hospitalizations, ED visits and costs in the last two years of life. Advance care planning is a win for patients, a win for providers, and a win for healthcare systems.
Counselling on Selection of a Health Care Agent (Surrogate): Anyone can be chosen by the individual to be their healthcare agent with three exceptions:
- Patient’s supervising healthcare provider unless related to the patient
- Any employee of the healthcare institution where the patient receives care unless related to the patient
- Any operator or employee of the facility where the patient lives unless related to the patient
The optimal healthcare agent should be willing and able to serve (assess the capability of the surrogate as well as the patient), knows the patients values and preferences, is able to make difficult decisions, and is willing and capable of speaking for the patient. The scope of authority of a healthcare agent includes:
- Choosing a healthcare provider
- Approving or refusing medical treatment
- Agreeing to testing
- Reviewing medical records
- Donating organs
- Authorizing autopsy
- Directing the disposition of remains
The legal standard for surrogate decision making is either in accordance with the expressed wishes of the patient (substituted judgement) or if wishes are unknown, based upon the values and preferences of the patient. This means decisions are made as if the surrogate were standing in the shoes of the patient, making the decisions the patient would have made.
To name a healthcare agent, assist the patient in writing in the name, address, phone number and other contact information (eg. email address) for the primary surrogate. Also assist the patient in considering and putting in writing a backup or secondary surrogate if the primary is not available.
If the patient has not designated a healthcare agent, should they become incapacitated, the default surrogate is activated. These default agents include the spouse or domestic partner, and adult sibling, an adult child, an adult grandchild, or an adult relative with the closest degree of kinship. In a skilled nursing facility, the default surrogate is the attending physician.
Leeway is the degree of autonomy granted to the surrogate in making decisions for the patient. A patient can decide not to grant leeway meaning the surrogate must follow strictly the wishes of the patient. In other circumstance, the patient may decide to grant partial or full autonomy or leeway to the surrogate to use their judgement.
A section of the Advanced Directive allows the patient to determine if the surrogacy is immediately active or is only activated when a physician determines there is loss of capacity of the patient. Note the term ‘competence’ is not used as it is a legal term and is determined by a court.
Counselling on Living Will: A living will is the component of the advanced directive that provides guidance to the surrogate on what values and wishes that patient has about their continuing care. It make include:
- What makes life worth living
- Where the patient wants to die
- The role of religion or spirituality in the dying process
- Desire or lack thereof for supportive treatments
- Life support including CPR, feeding tubes, dialysis, blood transfusion, artificial ventilation
- Donation of patient’s organs
- Preference for autopsy
Completion of the Advanced Directive: When a healthcare agent or surrogate is named and a living will is completed designating what the patient’s wishes might be, the Advanced Directive is signed by the patient. In order for the Advanced Directive to become a legal document, it must either be witnessed by two people or notarized by an authorized public notary. Note that both the witness signature and the notarization only testify that the signature belongs to the patient, and not to the validity or completeness of the Advanced Directive. As noted above, the patient can elect to activate the Advanced Directive immediately upon signature and witness/notarization or can elect to activate after signature and witness/ notarization only when the patient is incapacitated.
When to Consider a Physician Order for Life Sustaining Treatment (POLST): The Advanced Directive is appropriate when a serious illness or chronic disease is first diagnosed at minimum, and updated on a regular basis as the patient ages and their health status changes. A good case could be made for starting to do Advance Care Planning, having advance directive conversations, when the patient is young. One could consider for instance, a high school graduate to receive a diploma and an advance care planning document. What is key is the recognition that advance care planning is about repeated conversation over time with an individual about their wishes. The Advanced Directive is the document that captures these conversations.
When a patient becomes more seriously ill and is approaching the last phases of a terminal trajectory, you could discuss physician orders for life sustaining treatment and complete a POLST form (capolst.org). This state approved form has four sections:
Section A: cardiopulmonary resuscitation (CPR or Do Not Attempt Resuscitation = allow natural death)
Section B: medical interventions (full, selective, comfort-focused)
Section C: artificial nutrition (long term, trial, no artificial means including feeding tubes)
Section D: Information and signatures.
This form can be signed by either a physician or a nurse practitioner/ physician’s assistant. Make copies for the patient’s medical record, provide copy to the patient and the patient caregiver/surrogate. This form should be with the patient at all times.
To learn more about POLST, the link below sponsored by the California Coaltion for Compassionate Care provides great resources.
Partnership HealthPlan Commitment: Our commitment to the seriously ill members in our plan is strong and manifest through the Partnership HealthPlan’s Offering and Honoring Choices Initiative. This is a set of 14 activities that promote, support and facilitate a spectrum of palliative care activities, including completion of advance care directives and POLST completion. Of note, PHC has included advance care planning in the Quality Incentive Program (QIP). For each patient over 18 for which you perform an advance care planning conversation and provide an attestation to PHC, Partnership will pay you $100 up to 100 submissions. In addition, submission of a completed POLST with the advance care planning attestation will receive an extra $100. Total attestations/submissions per provider is 100 or $20,000 per practice.
In addition, PHC in partnership with the California Coalition for Compassionate Care is holding a series of training on advance care planning.
January 31st in American Canyon.
March 21st in Santa Rosa
March 28th in Eureka
March 31 in Redding
To register for one of these day long events or to get more information, contact Karen Goelz at kgoelz@partnershiphp.org or (707) 420-7622
Other Resources
http://coalitionccc.org/tools-resources/advance-care-planning-resources/