Blog: Q&A with Dr Venkata Chaitanya on advance care planning in people with Parkinson’s

Conversations around advance care planning can be difficult to approach, and Covid-19 is currently another aspect to consider. What are your suggestions for healthcare professionals preparing to have these conversations with their patients and family members?

I'd recommend that they consider the 4 W's:

When? End of life care involves planning ahead up to a year in advance. Although the challenge remains to identify this patient group, tools such as The Gold Standard Framework (GSF) prognostic indicators and Supportive and Palliative Care Indicators Tool SPICT can help to do so. 

• View the Gold Standard Framework (GSF) 
• Use SPICT 

Through early identification, we are more likely to achieve what people with Parkinson’s and their carers and relatives ‘want’ and ‘do not want’ in the last days of their life.

Where? Firstly, I would urge health and social care professionals to consider whether they are creating an opportunity for people with Parkinson’s and their carers/relatives to talk about the future. This involves mentioning that the person with Parkinson’s will become less well at some point, and finding out what would be important to them when they do. This could be done in their own environment, a clinic or on the medical ward. 

Who? These are challenging, emotional conversations and so before talking to a patient and their families, professionals should consider their own knowledge and skills to facilitate such discussions. If they are not comfortable having the conversation, they should seek support from an appropriate colleague in the multidisciplinary team. I would strongly urge colleagues to attend these consultations to learn and experience more about advance care planning. 

What? One of the aims of advance care planning is to offer discussions around “what are the common reasons for deterioration in people with Parkinson’s?” and explore “what are the appropriate and realistic treatment options?” When carried out in an elective manner, these proactive conversations, more often than not, identify the person’s wishes and preferences around medical interventions, preferred place of care and preferred place to die, and anything else the person with Parkinson’s and their relative/carer wants.

What about in relation to the Covid-19 pandemic?

The conversation should include talking to people with Parkinson’s and their carers/relatives about the possibility of contracting the virus. I usually begin by asking “Are you concerned about getting Covid?” or “Have you been thinking about what would happen to you if you got Covid?”

Once I have checked whether they would like more information, I will talk to the patient and family about what would happen if they caught Covid (ranging from mild to severe illness needing hospital admission), and what would be the best way of managing it.

This involves asking the person whether they would like to be treated at home or accept hospital admission if offered, and highlighting the fact that communication and visiting for the family would be much more restricted in hospital. Professionals should be respectful and supportive of a patient's choice to remain at home, but should ensure that a comprehensive health and social care plan is in place ahead of any deterioration. Similarly, it is important that patients understand the uncertainty around response to treatment, i.e. there is no guarantee they’d get better if they were to go into hospital.

It is important to highlight that when professionals are having these conversations and making plans, they need to consider how best to share them with the wider multidisciplinary team in primary and secondary care settings, eg. through using ReSPECT form. You can view the ReSPECT form here.

What general management principles of palliative care would be useful for healthcare staff to be aware of when supporting people with Covid-19 at the end of life? 

Any person with Covid-19 has the potential to deteriorate rapidly; more so if the person is older, has a chronic progressive condition and other comorbidities. It is important to communicate this risk to people with Parkinson’s and their carers/relatives.

In the last days of life I’d recommend making a joint plan with the person with Parkinson’s (if able to) and their relative/carer, setting out how best to manage their symptoms. This should include a discussion around replacing oral dopaminergic medications in a patch and using anticipatory medications in a syringe pump to manage pain, breathlessness, delirium and rigidity. Oxygen can be continued if noted to be helpful with breathlessness or started as a trial via nasal prongs for the same indication. Fever can be an issue and should be treated with paracetamol, either orally or intravenously, or with non-steroidal anti-inflammatory drugs (NSAIDs) given subcutaneously.

Irrespective of the duration, we need to have a proactive conversation with the person with Parkinson’s (if able to) and their relative/carer around the benefits, burdens and risks of starting or continuing fluids and nutrition -  ‘Clinically assisted nutrition and hydration’. 

Recent ONS 'place of death' data found there has been an 80% increase in the number of people dying from Parkinson’s in their own homes during the coronavirus pandemic. What considerations need to be made around palliative care at home for people with Parkinson’s?

I would advise healthcare professionals to ensure they are constantly considering the four components to palliative care, and taking each one into account.

• Physical: this involves making a joint plan on how best to manage the patient’s symptoms in their last few days of life. As discussed above.
• Psychological: the thought of dying from Covid-19 can be scary due to the constant media reporting. Offer to talk through what deterioration would look like with the person with Parkinson’s (if able to) and their relative/carer, and reassure them that we have tools to keep them comfortable. You should also ensure that the relative/carer has all the relevant contact details of individuals and agencies that can provide support ‘in’ and ‘out’ of hours eg. Community nursing team, GP, out of hours medical support, local specialist palliative care unit and social services.
• Social: consider and arrange appropriate referrals for equipment and care packages. Could involving the voluntary sector locally be helpful? (e.g. sitting services).
• Spiritual: most importantly, professionals need to be asking the person with Parkinson’s: "what is important to you?” and find out what should be the focus in their last days of life. For some people this may be being with relatives/carers, for others it may be their faith, or it may be something else. 

As well as caring for the patient, how can healthcare professionals continue to support carers and family members of people with Parkinson’s during conversations about advance care planning and end of life?

Again, the key word here is ‘proactive’. If carers and families run into problems, they need to know who they can contact for support - both in and out of hours, so it is vital that professionals are having open and honest conversations about the person with Parkinson’s potential for deterioration well in advance. 

It is important to relatives and carers that they feel prepared for what the future may bring or look like, so I’d recommend having conversations about the future early so they can be involved in decision making. This could include recommending to the person with Parkinson’s that they make a will or set up a lasting power of attorney for health and welfare.

What is your key take home message?

I'd like to reiterate what I view to be the 4 key questions healthcare professionals need to be asking themselves when they are providing palliative care to people with Parkinson’s who’ve contracted Covid-19:

• Have I created the opportunity for patients and families to ask me about Covid-19? 
• Have I given the individual and their relative/carer enough information about the virus, to let them know what could happen and treatment options?
• Have I been proactive in exploring the patient’s wishes and preferences around future deterioration? Have I shared it with the right people, both in the hospital and in the community? 
• Have I identified what’s important to the patient?