Never too early

If you had a stroke tomorrow, leaving you unable to move one half of your body, unable to swallow and to speak, who would you want to speak for you? As advisers, you probably recommend your clients document their wishes. But, does the person named as lasting power of attorney (LPA) feel prepared to help guide medics in the decisions that may need to be made about care? What about the rest of the family? Will they respect these wishes?

Advance care planning (ACP) is a process of reflection on and communication of a person’s health care preferences. Best viewed as a process, not a one-time event, ACP encourages conversations between a person; their family; and health, legal and other professionals to identify their wishes and values that can guide medical decision-making if a person becomes incapable of consenting to or refusing health care interventions. The basic components are:

• thinking about personal values and wishes related to health care, particularly at end of life

• choosing a person to represent final wishes (LPA)

• learning about prognosis and the various treatment options, risks, benefits and expected outcomes

• communicating preferences or goals of care to the attorney, other family and health care providers

• documenting these discussions and decisions in a way that is accessible to health care providers; and

• reviewing ACP and related documents regularly, or when wishes, values or health circumstances change.

A growing body of medical research suggests it really matters that clients take part in ACP. Those who do are more likely to receive care consistent with their stated wishes and are more likely to be satisfied with their care.

Sick, older people are as likely to have discussed their wishes for life-sustaining therapy with their lawyer as they have with doctor. This is according to recent research in Canada that has shown a disturbing lack of concordance – about a 30 per cent agreement – between a hospital in-patient’s stated preference for care and the actual medical orders.

Health care systems and health care professionals are working to close this gap, but they need the help of lawyers, financial planners and other private client advisers to promote ACP. The message to share with clients is important not only to plan for death through estate planning and wills, but to plan for the care they want before death.

LPAs; advance directives for refusal of treatment; statements of wishes and preferences; living wills or other written documents (names depend on jurisdiction) can specify a decision-maker and guide medical care, including refusal of specified treatments for use when a person has lost capacity. Advisers can promote these ACP documents and encourage the conversations that enhance them.

First, you can provide counsel on how to select an appropriate LPA. Often clients select their spouse without considering whether they are someone who can communicate clearly (without memory or cognitive issues), who can make difficult decisions under stressful circumstances and can be trusted to represent your clients’ wishes. Has your client thought about the physical availability of their named attorney?

Speak up

Many health care providers would say that the ACP conversations you encourage between your client and the named attorney are even more important than the documents themselves. Sometimes the named attorney requests all possible medical treatment to prolong life out of a feeling of guilt or fear that they should do everything possible. Having the conversations that could have clarified the person’s values and wishes for health care could have relieved the decision-making burden that comes from worrying about whether the medical-decisions made are the right ones.

Often advance directives for refusal of treatment do not specify the circumstances that a person encounters. For example, many such documents relate to a persistent vegetative state, which is a very rare occurrence, but provide little guidance on common medical decision points, such as whether to use intravenous antibiotics to try to prolong life for a person living with advanced dementia.

An IPSOS Reid Poll in 2012 in Canada found that only 50 per cent of adults had spoken to family members about their wishes for health care. You can encourage such conversations between your client and the rest of their family, which may reduce the likelihood of relatives voicing disparate opinions or facing outright conflict during stressful medical events. Again, this may help the named attorney clearly express your client’s views even when these are different from those of their family.

You can remind clients, that if they are living with a chronic or terminal illness they also need to speak to their doctor or other members of their health care team to make sure they understand their own prognosis and the kind of medical decisions or likely outcomes of treatments that they might encounter in the future. Are they likely to need to encounter feeding tubes or kidney dialysis and are there circumstances in which they might want to discontinue such treatments? Under what circumstances would the use of cardiopulmonary resuscitation actually achieve the outcome and quality of life your client is hoping for?

Conversations with health care providers help ensure that the goals of medical care match both the person’s values and what is medically appropriate. Your client should also share this information with their named attorney because they will have to make treatment decisions if your client loses capacity.

Engaging clients in ACP Private client advisers have a vital role to play and can assist in: counselling their clients to reflect on their wishes and values providing advice about selecting an appropriate person to be their attorney under a lasting power of attorney drafting the appropriate documentation, for example a statement of wishes and preferences regarding treatment, advance decision to refuse treatment and a lasting power of attorney to name a medical decision­maker in the case of incapacity encouraging clients to speak to their substitute and the rest of their family ensuring that the documentation is readily accessible in the event of an emergency; and normalising the process of ACP and providing the message that it is an ongoing process that can be reviewed whenever a client’s wishes or circumstances change.

Normal process

Perhaps most importantly, private client advisers can normalise the task of ACP as something in which all adults should participate. This can help reduce the fear or emotional discomfort of contemplating ill health and death that can be a barrier to ACP. It is generally agreed that the best time to start ACP conversations is when clients are well and not in intensive care or A&E.

When a doctor raises ACP, people sometimes fear that they are being singled out because their prognosis is worse than they thought. A better time to contemplate these issues may be when preparing for retirement, estate planning or considering life insurance.

The value you can bring during these consultations is enormous. While the nomenclature varies across jurisdictions the principles remain the same.

Finally, advisers can assist their clients in knowing what to do with these documents. Specifically, that clients should let their attorney and family know where their ACP documents are kept and to bring them into hospital when they are admitted. Sadly, ACP documents are sometimes found after death.

Clients’ desires about controlling their life – and death – is shifting. ACP offers an opportunity for them to influence the medical decisions that will be made for them, even when they are unable to make those decisions themselves.

Dr Jessica Simon is a palliative care physician and physician consultant to advance care planning and goals of care designations, Lonny J Rosen is a partner at Rosen Sunshine, Shelley Birenbaum is president and counsel at Shelley R Birenbaum Professional Corporation in Canada

The authors would like to thank Daniel Simon, a partner at Collyer Bristow, who checked their translation of Canadian legal terms

Further reading

• NHS care planning
   
• Advance care planning in Canada