Blog: An advance care plan — the gift that keeps on giving

Developing an advanced care plan with their father helped a nurse, her family and health professionals meet his end-of-life wishes and care for him at home.

This article has been republished with the kind permission of Kai Tiaki Nursing New Zealand.

I have been nursing for several decades and have witnessed many deaths — some I would consider 'good deaths' and others, not so good. There are many reasons why a death may be considered 'good' or not so good. For me, it is easier to say what is good about a death, although this is a subjective judgement made as a daughter, a friend and a nurse.

From my perspective a 'good' death, includes:

• family presence that is stress free
• an understanding about the dying process and what can be expected
• engagement with the person — physical, emotional, and/or spiritual
• feeling empowered
• having time to say goodbye
• a sense of readiness for both the person dying and the people supporting the dying person.

Recently, I was privileged to be able to provide end-of-life care for my father, Thomas Brian Hardcastle, known as Brian. He had a good death. The opportunity to nurse Dad at home was partly luck — things out of our control or, as some may say, 'by the grace of God'.

On the other hand, forward planning was equally as important, to enable coordinated care between the GP and practice nurse, community support, the hospital and hospice care. Having an advanced care plan (ACP) was key in supporting Dad's wishes and to making the palliative care journey less traumatic for him and our family.

On sharing our experiences with friends, I began to hear stories that did not reflect my judgement of a 'good death', particularly in the aged-care sector. I could see how the death experience had unresolved implications that not only exacerbated grief and loss, but made some fearful of their own death journey. This left me to reflect on how we, as nurses, can facilitate a 'good' death experience.

This article is not about the legal aspects of end-of-life care, but about having the confidence to support a loved one's wishes to die at home. Dad's ACP supported the family and the health professionals involved to provide person­-centred care within a legal and ethical framework. My dad did not need heroes to prolong his life — he wanted heroes who listened and empowered him as part of his 'dying' journey.

Any person who is legally competent to make a health care choice has the right to make an advance directive [1]. This is a written statement about a person's health care wishes to be used when they are no longer able to communicate, or have the capacity to make decisions. A person(s) is appointed as their enduring power of attorney, so they can act on the person's behalf when necessary. The ACP aligns with the directive, and should be completed before an illness or an emergency. The ACP is ideally discussed with family/friends. The care plan is not static, but a living document, stipulating the person's wishes about their end­-of-life care, when they do not have the capacity to make informed decisions for themselves.

Dad had been ill for many years with chronic obstructive pulmonary disease (COPD), and had required several hos­pital admissions for exacerbation of his condition. While he was fondly known in the family as 'Lazarus' (the biblical character), as he was, on many occasions, 'restored back to life' — we were realistic about his prognosis.

No ACP initiated

Despite the repeated exacerbation of COPD, the idea of an ACP had not been formally discussed with Dad, although as a family, we had. Dad received CarePlus through the general practice. It is described as 'a primary health care funding initiative to support people with high health needs' [2]. Although Dad had access to CarePlus, and while an ACP may have been mentioned to him, one was never initiated by any of the health care providers he saw.

The Ministry of Health indicates that 'one conversation about advance care planning can make a difference' [3]. Nurses play an essential role in providing access to an ACP, and talk with clients and their loved ones, as therapeutic relationships are established. Ideally, these are conversations we all should have while in good health.

In Dad's case, we had several conversations about treatment choices and initiated a plan a few years earlier. I felt reassured the ACP would reduce the burden on my family, and Dad, about end-of-life care choices. Initiating the ACP would have been more challenging had I not had nursing experience to draw on, to facilitate dialogue about treatment options and consequences. These discussions required time, which many health providers do not have.

A three-fold gift

The ACP is described by the ministry as a gift to loved ones, the gift of sharing with others what they want [4]. In our case, the gift served three purposes: my father's treatment became known, and he felt he had an 'end-of-life policy'; it provided me, and my family, with some peace of mind when I was not present; and the ACP provided a gift of consent for health care providers to approach difficult conversations, particularly in times of emergency.

Dad's GP welcomed the 'gift' of the preliminary plan, so she had time to discuss and confirm with dad that he was the author of his plan and what it meant, before the final sign-off.

Our last gift to Dad was to care for him at home and help him have a good death. Dad was not scared about dying, but how he would die, having seen his father decades earlier suffer with lung cancer and fight for every breath. As a nurse, I felt that as a family, we had the confidence to provide home care, assisted by community hospice support. Being home supported dad's sense of being in control.

Dad loved a joke. Sensitive and emotional conversations were buffered through humour. As he approached palliative care and hard questions were asked, we spoke in the third person referring to Lazarus - something that happened unknowingly at the time. On reflection, this third person approach provided a buffer during emotional conversations as we spoke about Lazarus, and not Dad. For example, Dad had a fainting (syncope) episode as we helped him to the bathroom. On recovering, he opened his eyes and said, 'was that a Lazarus moment?' We laughed and the humour lifted our spirits, reducing the stress of potentially thinking we had just lost him. More recently, in the emergency department (ED), Dad asked me, 'Is Lazarus dying this time?' I smiled as tears welled into my eyes and said 'yes, we think Lazarus's time is finally up.' My dad was dying.

Caring for a person with chronic illness in the community requires coordinated care, which in our case predominantly fell on my mother. Although there is an array of services available, knowing about them or having access to the key stakeholders was not always easy. This required some research by ourselves, or I asked my work colleagues. Occasionally, when I suggested contact a service provider, as I had identified a need, there was reluctance from my parents.

Loss of control

On reflection, one reason for this reluctance was their sense of not being in control. Another was a fear of being assessed as not coping. With this, came the risk that they may be made to move Dad into institutional care. The ACP provided some assurance we would do what was possible to care for Dad at home, up to the point that it became unsafe for him and us.

From a nursing perspective, it is important we recognise these chal­lenges. We must question when services are declined, and not assume they are not needed, but rather explore a client's emotional reasoning should they fear they will be judged as not coping or los­ing control. 

Community services were either free or at reduced payments. These included GP and practice nurse consultations; Sleep NZ (continuous positive airway pressure machine and respiratory support via the phone) and community health (ACCESS), which provided one hour of home help a week. The pharmacy provided support, as polypharmacy contributed to extending Dad's life. However, this regularly required a lot of medications being adjusted, stopped or changed, particu­larly on discharge from the hospital. Medication education is an essential part of the discharge process, yet more than 50 percent of medication errors occur at transitions of care [5].

Managing medications

A blister or 'compliance' pack is one way of managing complex regimes, which minimises the risk of potential errors. However, this was something my parents did not want. Dad had become proficient over the years at 'adjusting' his medica­tions based on how he was feeling at any given time, although this can have seri­ous implications. His sense of being in control, however, was as important. This sense of being in control of his medica­tions, including pain relief, continued during palliative care, but with hospice support.

The community occupational therapist played a fundamental role in promoting Dad's independence and our capacity to nurse him at home. Ministry of Health funding was used to access an electric bed and air mattress, to prevent fur­ther deterioration of grade 1-2 pressure injuries and to promote Dad's quality of life. Access to these services and equipment were paramount - services we only became aware of through the community occupational therapist (www.enable.co.nz).

Assistance from St John

My parents funded additional equipment, including a wheelchair, walking aids, and a special remote-controlled chair that helped dad stand up. They also paid for a yearly membership of St John, which provided emergency care, transport and, sometimes with the help of the fire service, assisted dad off the floor after a fall.

The last and most important piece of the jigsaw in providing safe quality home care, was my mother's diligence and attention to Dad's needs, both physical and emotional. Without the specialised equipment and support services, nursing dad at home may not have been pos­sible. These additional resources helped maintain his independence and control over his activities of daily living. 

As it became evident Dad was deteriorating, a hospice referral was required. Unfortunately we could not access a GP home visit, and so had to take him to the ED by ambu­lance; I gave Dad's gift, the ACP, to the paramedics, so they knew his wishes and would not provide resuscitative care. On arrival in ED, the ACP meant the doctors did not have to dance around end -of-life conversations — we could all be honest and truthful and make good decisions with, and for Dad. I felt Dad had control of the situation. Despite the ACP, he was still asked what he wanted. Dad turned to me for guidance when offered antibiotics asking 'what should I do?'.

These were difficult moments, now we were faced with the actual choice. I did not want to let my dad go, but had to be strong and support his wishes. Again, subconsciously, the third-person approach provided a buffer: 'Dad, what does Laza­rus want to do?'.

Having the ACP expedited palliative care for Dad and after a few days we brought him home. As a family, we all felt empowered, supported and relieved that we could support Dad's last wish. Even when facing death, Dad had a sense of being in control, highlighted through his humour. Possession of the television remote had been a conten­tious subject most of my parents' married life, and with the new chair came an­other remote. Dad gripped both controls tightly, telling Mum he would not release them until death. As Dad progressed towards end of life, he lost interest and gave up the TV remote, but held the chair con­trol. When we tried to remove it from his hand, he gripped it tighter, holding it until his last breath. 

Dad was able to follow commands and assist with some degree of mobility until several hours before he died. In those last hours, at his most vulnerable, he was strong and determined to die at home. Dad's passing comforts us as we recall Lazarus's good death. This enables us to grieve healthily.

So, how can we facilitate a 'good' death experience? There are many ways nurses can, and do, facilitate a good death. The ACP is one way to start the process that requires us to think, talk and plan end-of-life care, or to make our health care wishes known, when we no longer have the capacity to make de­cisions. We should all stop to think, talk and plan for our future clients, and for our family and friends. More importantly, let us do this for ourselves — let's provide a gift to our loved ones.

Author: Mary-Ann Hardcastle, RN, Master of Public Health & Tropical Medicine; PhD (Nursing), is the competency assessment programme co­ordinator and a tutor at Nelson Marlborough Institute of Technology.

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