In medicine, a large part of the healing process is … hope. Hope, that with all the tools that modern healthcare has at its disposal, patients suffering from various illnesses will get the care they require, and will eventually get back to regular, healthy lives. However, it becomes hard to channel this hope, when their paths are made difficult due to many complications, some because of the illness itself, or as side effects of the treatment they are prescribed, which can be life threatening.
The Emergence and Progression of Palliative Care
Palliative Care is a medical approach that was developed to help the patient, care givers and treating physicians, along this difficult path, with the goal to look beyond the disease and address the needs of the patient as an individual. It can be provided at any age and during any stage of the treatment process, starting right after diagnosis, along with curative care, to alleviate the discomfort or disabilities caused due to the disease progression or due to treatments like chemotherapy and radiation. It can also be offered at the culmination of conventional treatment programs, to provide comfort and improve quality of life, for patients who are facing terminal illness or end stage diseases.
Examples of some of these debilitating conditions are :
- Haematology and Oncology diseases, such as leukaemia or organ cancer
- Advanced heart and lung diseases ( like, congestive heart failure and chronic obstructive pulmonary disorder)
- Advanced liver and kidney diseases ( like liver cirrhosis or end stage renal disease)
- Advanced neurologic illnesses (like, Alzheimer’s and Parkinson’s disease)
The dark side of medicine and arguably ,one of the toughest things a healthcare professional has to do, is to communicate effectively with patients about their diagnosis with a terminal illness or chronic debilitating condition, knowing that the treatment plans along with their side effects, will take both a physical and mental toll.
In these cases, Palliative care :
- gives an extra layer of support for treating physicians, as well as patients and care givers.
- provides the patient relief from chronic pain and other distressing symptoms
- helps patients to live as actively as possible, while integrating various aspects of holistic patient care including medical interventions, social support , emotional and spiritual well-being as well as practical guidance.
- involves a multidisciplinary team of doctors specialised in palliative care, nurses, nutritionists, physiotherapists, social workers and psychologists or mental health professionals.
The Growing Demand for Palliative Care
The Growing Demand for PalliatIn the United States there is a rising requirement for the supply of palliative care, over the last decade, leading to the creation of more than 1,000 new palliative medicine programs, based in hospitals. In 2010, two thirds of all hospitals offered palliative treatment options as opposed to the year 2000, when it was provided in only 25 % of hospitals with more than 50 beds. Similar to most countries in the world, America is faced with an ageing population, as well as a growing patient base suffering from and living with long term ailments. According to the CDC (Centres for Disease Control and Prevention) nearly 6 in 10 adults in the U.S have a chronic disease.ive Care
This has brought to the forefront, the increased need to advance and develop palliative medicine, using national resources like the CPAC (Centre to Advance Palliative Care) based out of the Icahn School of Medicine, at Mount Sinai, New York, offering the training, tools and assistance necessary to meet this demand, effectively. In order to train treating physicians to communicate with patients about their care goals and treatment plans when faced with patients who require palliative care, frameworks like REMAP (Reframe, Expect Emotion, Map out patient goals) have been developed by VitalTalk, which provides verbal tools to help with patient-clinician communication about end of life care.
Hospice versus Palliative Care
It is important to distinguish between palliative care and hospice care, as they are often thought to be synonymous. However, hospice is a small part of Palliative Medicine.
Palliative care is indicated during any stage of illness, without consideration of the prognosis. Whereas, hospice care is generally provided when physicians, over time feel that neither conventional medicine nor palliative treatment plans are working and give the patient an estimate of six months or less to survive. Both hospice and palliative care can be provided at hospitals, at home, in nursing homes or at assisted living facilities, depending on the patient’s needs.
The patient could continue with palliative care, while stopping active treatment plans, but it would focus more on enhancing emotional and physical comfort, with end of life care, which revolves around the medical support given at the time surrounding impending death, with patients and care givers accepting their fate. It also helps them to deal with uncomfortable but practical decisions that need to be made, like wishes for funeral arrangements or wills and declarations as they put their affairs in order.
The Benefits of Palliative Care
Various clinical trials over the last few years have shown the benefits of palliative care , for both patients and healthcare providers , witnessing considerable improvements like:
- Patient satisfaction
- Quality of care delivered
- Control of physical symptoms like pain, nausea, etc
- Controlling the frequency and intensity of repeated hospital admissions for complications of ongoing treatments
- Control of emotional triggers causing anxiety and depression
- Reduced incidents of care giver burnout or distress
- Cost savings, due to palliative care at home or as an outpatient and remote health service.
Many models for palliative care delivery have been constructed using multicomponent, psychoeducational interventions like Project ENABLE (Educate, Nurture, Advise, Before Life Ends) which when adapted in cancer patients and cardiac failure patients, showed considerable improvements in quality of life.
Technology to Enhance Palliative Care Delivery
Technology and Palliative medicine is an odd pairing as they seem so opposed to each other, when considering their core components. While palliative care is considered to be the most human side of medicine, requiring empathetic and compassionate communication with patients, technology can be considered as being cold, impersonal and detached. However, the integration of technology with palliative medicine has revealed key focus areas in care delivery that benefited tremendously, like:
- Patient Independence ,making them feel as if they had control over some aspects of their lives.
- Patient Interactions, helping them to reach out to families and loved ones, being able to tell their stories and keep the solitude of suffering from a long term illness at bay.
- Communication between patients and healthcare providers, giving access to care even if the patient lives in remote areas.
Some innovations that helped bridge these gaps in care delivery are:
- Videoconferencing : In the age of FaceTime and WhatsApp Video, friends and family are just a call away. A terminally ill or immuno compromised patient who finds it difficult to attend large gatherings can attend a loved one’s birthday party, virtually, helping them to maintain emotional ties and stave off depression or loneliness.
- Telemedicine : Through the magic of the internet, especially with the Internet of Medical things (IOMT) , doctors are available for virtual consultations that help patients who struggle to travel to receive outpatient care, or who live far away from their healthcare providers.
- Remote Patient monitoring : The growth of wearable technology with portable tools like fitness bands or watches, EKG monitors and motion or fall detectors, e-stethoscopes and smart glucometers, can make monitoring patients with end stage diseases easier and less cumbersome. Care providers and physicians can get access to the patients’ health data, remotely, resulting in quicker interventions to improve care if required.
- Automation of Living spaces : Patients with decreased mobility, reap the benefits from automated smart home or voice activated systems, like video doorbells or lighting control, which helps them to retain a sense of independence and control as they navigate through their disease progression.
- Social Media as a tool providing access to support groups for both patients and caregivers, improving interactions and communication. A public engagement initiative like the patients express their wishes for end of life care.
Even though significant progress has been made, further inroads into developing an effective , competent workforce of palliative care practitioners and teams, through education, awareness, training and research funding is required, to provide dignity and improved quality of life to patients suffering from debilitating chronic and end stage diseases.