Dr. Miriam Colleran, Consultant in Palliative Medicine explores how people can be supported to live and die as well as possible.
Medical advancements have led to many positive developments for patients. Many diseases that previously were life threatening have become chronic illnesses with timely and appropriate medical interventions. Some cancers that were previously terminal have become potentially curable. Similarly, persons with advanced illnesses that previously had relatively short prognoses may now have longer prognoses depending on the particular disease and treatments received.
These positive and welcome developments emphasise the importance of supporting persons living with serious and terminal illnesses through their illness journeys. As Dame Cicely Saunders, founder of the current hospice and palliative care practice, said: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
While there is an awareness of the need for persons who are dying to have a good death, all the time a person is living with a progressive illness matters. This is important for the person and for their loved ones or families. Persons who are bereaved cope better in bereavement if they feel that their deceased loved one was well cared for and that their concerns were addressed. Palliative care considers the individual with the illness and their supportive group which is usually family but can be unrelated loved ones. Knowing a person’s preferences regarding attitudes to hospitalisation and whether or not the person wants to die at home can be very helpful both for the loved ones in supporting the person and for the clinical teams involved. Compassionate, skilled and informed communication is central to providing person centred healthcare especially in advanced illnesses and at the end of life.
Healthcare needs to be evidence based, kind and individualised. To adapt care to the individual however, requires that the person’s hopes, values and expectations are known and understood. Prof. Harvey Chochinov’s Patient Dignity Question (PDQ) “What do I need to know about you as a person to give you the best care possible?” is intended forclinicians to use when communicating with patients. It is a useful aid for understanding a person’s hopes, expectations and values. This links with the quality initiative “What matters to you?” Asking a patient what matters most to them can be a very useful means of empowering patients to voice their hopes and wishes for themselves.
Advanced care planning (ACP) is a means of supporting persons who have serious illnesses to express their wishes for their end of life care. As Morrison, Meier and Arnold reported “The purpose of ACP is to ensure goal-concordant care near the end of life for patients who lack decisional capacity.” However a person’s hopes, wishes and expectations may change over time as their disease progresses or changes. They are seldom “static.” In practice, this means that advanced care planning is wider that a document, a standalone event or a single conversation. Instead ACP involves a series of person centred conversations between the patient and healthcare professionals with the aims of determining a person’s goals of care and wishes.
There are different tools to aid ACP internationally. ‘Think Ahead’ from the Irish Hospice Foundation includes an advanced healthcare directive (AHD). In Ireland, an AHD, or a living will, is a legal document where the person records medical care that he or she does not want to receive. It may include preferences regarding cardiopulmonary resuscitation. A person cannot demand to receive a particular treatment here but can express a preference for a certain intervention. A doctor does not have to either start nor continue non-beneficial care. ReSPECT in the UK is a “Recommended Summary Plan for Emergency Care and Treatment” including if the person gets a cardiac arrest.
Dr. Ira Byock, past President of the American Association for Hospice and Palliative Medicine, said that when he is discussing advanced directives with patients, he explains that “This is a way for you to take care of your family if a crisis happens and you’re unable to speak for yourself, and they, those that you love, will be left to struggle with decisions about your treatment and care.” He explained further that a living will is a way that the person “can perhaps lessen the burden that they’re going to feel as they struggle with these decisions by shouldering it a little bit, by telling them what you think you would want. They’re still going to have to fit those values and preference to the particular condition and treatments being offered, but at least you can lighten the load a touch.”
It is not possible however to consider all possibilities beforehand. Discussions with patients and loved ones on whether or not to escalate care may be complex and emotive. ACP has received criticism that it can constrain contemporaneous discussions on the “goals of care.” By contrast, Curtis shared his familial and personal experiences of advanced care planning, both in terms of the benefits and also of using it when decision making was unclear.
The podcast entitled “the Waiting Room Revolution” helps to educate, support and empower persons with illnesses and their families or loved ones to navigate the illness journey and their healthcare interactions. Meanwhile “Conversations about advanced care planning with Clare Fuller” is a podcast on advanced care planning.
Helping our patients to live and to die as well as possible requires good symptom management, person centred, evidence based and compassionate care. It also includes helping the person, if possible, to focus on the present as John O’Donohue described in A Morning Offering “May I have the courage to live today / To live the life that I would love, / To postpone my dream no longer / But do at last what I came here for / And waste my heart on fear no more.”
Dr Miriam Colleran, is a Consultant in Palliative Medicine, in St. Brigid’s Hospice and Naas General Hospital, Kildare and West Wicklow.