Slow Uptake of Advance Care Planning in Portugal: Just Over 45,000 Have a Living Will
Lisbon, Portugal – While the concept of proactively planning for end-of-life care is gaining traction globally, Portugal is seeing a relatively slow adoption rate of “testamentos vitais” – living wills – with just over 45,000 registered as of December 31, 2025. This allows individuals to document their wishes regarding medical treatment when they are no longer able to communicate their decisions. The figure represents an 8% increase from the beginning of 2025, but advocates say more needs to be done to raise awareness and simplify the process. The story of Cândido Mota, a 62-year-old recently diagnosed with Amyotrophic Lateral Sclerosis (ALS), highlights the personal motivations driving individuals to create these documents, and the desire to alleviate the burden on family members during difficult times.
Mota’s decision to create a living will stemmed from a desire to maintain control over his end-of-life care and to spare his family from having to make agonizing decisions on his behalf as his condition progresses. ALS, a progressive neurodegenerative disease, gradually robs individuals of their ability to move, speak, and eventually, breathe. Facing this reality, Mota opted to formalize his wishes regarding medical interventions, specifically aiming to avoid invasive procedures. His experience underscores a growing recognition of the importance of advance care planning, allowing individuals to express their preferences for medical treatment when they are no longer capable of doing so themselves.
What is a Living Will?
A “testamento vital,” also known as an Advance Directive of Will, is a legally recognized document in Portugal that allows citizens over the age of 18 to outline their preferences for healthcare when they lose the capacity to make informed decisions. According to the SNS24, the Portuguese national health service’s online portal, these directives can specify the types of treatments and care individuals wish to receive – or decline – in various medical scenarios. Crucially, a living will also allows individuals to appoint one or more healthcare proxies, individuals authorized to make decisions on their behalf when they are unable to do so.
The concept of advance care planning has evolved significantly over the decades. As detailed in a recent article on Pilulas Paliativas, the origins can be traced back to the “living will” movement in the United States in the late 1960s. Attorney Luis Kutner, a champion of human rights, first proposed the idea of allowing patients to document their wishes regarding medical treatment, particularly in cases of terminal illness. Kutner recognized the ethical complexities surrounding euthanasia and assisted suicide and argued that patients should have the right to refuse treatment, even if it meant hastening their death. This initial concept has since been refined and legally codified in many countries, including Portugal.
Barriers to Adoption and the “Chatice” Factor
Despite the legal framework and growing awareness, the relatively low number of registered living wills in Portugal suggests significant barriers to adoption. One frequently cited obstacle is the perceived complexity and bureaucratic hurdles involved in creating the document. As one individual quoted in reports from PÚBLICO set it, “fazer o processo é uma chatice” – “the process is a hassle.” This sentiment highlights the need for simplification and increased accessibility to encourage wider participation.
The process of creating a living will in Portugal involves several steps. Individuals must first carefully consider their wishes regarding medical treatment and discuss them with their healthcare providers and loved ones. They then need to formally document their preferences, typically with the assistance of a lawyer or notary. The document must then be registered with the appropriate health authorities to ensure its validity and accessibility when needed. The perceived complexity of these steps, coupled with a general reluctance to confront end-of-life issues, may contribute to the low uptake rate.
The Importance of Healthcare Proxies
Beyond specifying treatment preferences, the designation of healthcare proxies is a critical component of a living will. These individuals are entrusted with making medical decisions on behalf of the patient when they are unable to do so themselves. Choosing a proxy requires careful consideration, as they will be responsible for interpreting the patient’s wishes and advocating for their best interests. It’s essential to have open and honest conversations with potential proxies about one’s values and preferences regarding medical care.
The role of the healthcare proxy is particularly important in situations where the patient’s wishes are ambiguous or unclear. Medical ethics often involve complex considerations, and healthcare proxies may need to navigate difficult decisions in consultation with medical professionals. Having a trusted and informed proxy can provide peace of mind, knowing that one’s healthcare decisions will be made by someone who understands and respects their values.
Looking Ahead: Increasing Awareness and Accessibility
Efforts are underway to increase awareness of living wills and simplify the process of creating them in Portugal. Healthcare organizations and advocacy groups are working to educate the public about the benefits of advance care planning and to provide resources to help individuals create their own directives. There is also a growing call for streamlining the bureaucratic procedures involved, making it easier for individuals to register their living wills and ensure their wishes are respected.
The case of Cândido Mota serves as a poignant reminder of the importance of proactive end-of-life planning. His decision to create a living will reflects a desire to maintain control over his own destiny and to alleviate the burden on his family during a challenging time. As Portugal’s population ages and awareness of advance care planning grows, it is likely that the number of registered living wills will continue to increase, empowering individuals to make informed decisions about their healthcare and ensuring their wishes are honored.
The next update on the number of registered living wills in Portugal is expected to be released by the Serviços Partilhados do Ministério da Saúde (SPMS) in the fourth quarter of 2026. Readers are encouraged to discuss advance care planning with their healthcare providers and loved ones and to explore the resources available through the SNS24 website. Share your thoughts and experiences with advance care planning in the comments below.