Psychosocial-spiritual needs of persons with physical disabilities, their caregivers and healthcare professionals at the end of life: a mixed methods systematic review
This mixed methods systematic review identifies that end-of-life care for persons with physical disabilities, their caregivers, and healthcare professionals is currently dominated by physical symptom management, necessitating a shift toward a holistic, whole-system approach that prioritizes addressing interconnected psychosocial and spiritual needs through early, inclusive, and dignity-conserving communication.
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When a person lives with a physical disability, their journey through life is often marked by a constant negotiation with their body. For many, this involves managing limitations in movement, communication, or daily function that have persisted for years or decades. As these individuals approach the end of their lives, the focus of medical care traditionally shifts toward managing physical pain and symptoms. However, this narrow focus often overlooks the deeper, invisible layers of human experience: the emotional turmoil, the search for meaning, and the complex social dynamics that define how a person feels they are living and dying. These are the psychosocial and spiritual needs that shape a person's sense of dignity and connection. While society increasingly recognizes that good care involves more than just medicine, there has been a significant gap in understanding how these needs play out specifically for people with physical disabilities, their families, and the doctors and nurses who care for them.
A team of researchers from The University of Hong Kong set out to fill this gap by bringing together a vast collection of existing studies to see the full picture. They conducted a comprehensive review, gathering evidence from thirty-one different studies published between the year 2000 and late 2025. These studies came from around the world, including the United States, Australia, the United Kingdom, and several European and Asian nations. The researchers looked at the experiences of three distinct groups: the people with physical disabilities themselves, the family members or friends who care for them, and the healthcare professionals who treat them. By combining statistical data with personal stories and interviews, they created a detailed map of what these groups need and fear as life comes to a close. The evidence they analyzed was heavily concentrated on people with neurological conditions, such as amyotrophic lateral sclerosis, Parkinson's disease, and multiple sclerosis, where the disease often progresses slowly and unpredictably.
The review revealed that the end-of-life experience for these groups is defined by a profound struggle to maintain control and connection. One of the most powerful themes to emerge was the loss of autonomy. For people with physical disabilities, independence is not just about being able to walk or move; it is about the ability to manage the most intimate parts of daily life, such as toileting, washing, and dressing. When a person becomes dependent on others for these tasks, it often brings feelings of shame, humiliation, and a deep sense of losing their identity. This loss of control is not merely a physical inconvenience; it strikes at the core of a person's sense of self. The data showed that as physical function declines, psychological distress rises, with many individuals experiencing anxiety, depression, and a pervasive sense of hopelessness. This emotional burden is not carried alone; it is shared by the caregivers who watch their loved ones deteriorate and by the healthcare workers who witness the cumulative toll of long-term disability.
Beyond the internal struggle, the researchers found that the way care is delivered often fails to meet the needs of these patients. A significant portion of the evidence pointed to gaps in care delivery, where patients and families felt that medical interactions were rushed, impersonal, or focused too heavily on routine procedures rather than the person's lived experience. Many caregivers reported that their views were ignored and that the emotional and practical realities of their situation were not understood by the medical system. This disconnect is often made worse by communication barriers. For those who have lost the ability to speak clearly or at all, expressing their wishes becomes incredibly difficult. The review highlighted that without effective communication tools or patient-centered approaches, healthcare providers often struggle to understand what the patient wants, leading to decisions that may not align with the patient's values.
A particularly poignant finding was the widespread avoidance of conversations about death and dying. Both patients and their families often hesitate to discuss end-of-life plans, fearing that such talks will cause emotional distress or spoil the remaining time together. Yet, the evidence suggests that when these conversations do happen, they are often viewed as helpful and necessary. The problem is that they rarely happen early enough. Because of the uncertainty surrounding how quickly a disability might progress, doctors and families often delay planning until a crisis occurs. By that time, the patient may have lost the ability to make decisions, leaving family members to guess what their loved one would have wanted. This delay creates a misalignment in decision-making, where the care a person receives does not reflect their true preferences. The review also noted that many people with disabilities worry about being a burden on their families, a fear that can influence their choices about life-sustaining treatments and even their desire to hasten death.
The spiritual and existential dimensions of this experience were also central to the findings. Many individuals questioned the meaning of their continued existence, grappling with feelings of injustice about their loss of function and the suffering they endured. Some wondered if life was still worth living when it involved constant dependence and pain. While some found comfort in religious faith, others felt that their spiritual needs were overlooked by the medical system. The researchers found that these existential questions were often left unaddressed, leaving patients and families to navigate these profound uncertainties on their own. The review concluded that current end-of-life care for people with physical disabilities is often too focused on physical symptoms and not enough on the whole person. To truly support these individuals, care must shift toward early, inclusive, and compassionate conversations that honor their dignity and autonomy. It requires a system where doctors, families, and patients work together to ensure that the final chapter of life is written with the patient's voice, rather than just their medical chart, leading the way.
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