ALS End of Life Care
Amyotrophic Lateral Sclerosis (widely known as ALS). As this dreadful disease progresses and thoughts of ventilators and feeding tubes become more than just a distant memory, you seek answers, support, and some way to find comfort for both you and the patient. Everyone involved with end of life care is affected by the decision to discontinue medical care. The hospice care provided by our organization can make the process go more smoothly until the end of life for a patient.
Amyotrophic Lateral Sclerosis and Palliative Care
A neurological disease known as amyotrophic lateral sclerosis (ALS) is characterized by the death of nerve cells in various parts of the brain and spinal cord. It is referred to as “Lou Gehrig’s Disease” because it is a progressive disease that affects voluntary muscle action. The disease can progress to the point where a patient’s ability to move is completely lost.
ALS Symptoms & Treatment – Palliative Care Benefits
Palliative (pronounced “pal-lee-uh-tiv”) care is a type of medical treatment for people who are suffering from serious illnesses such as Lou Gehrig’s disease (ALS). The ultimate goal is to improve the overall quality of life for you and your family. Palliative care is available to patients of any age and at any stage of their illness. Alternatively, it can be used in conjunction with curative treatment.
Palliative care teams collaborate with you, your neurologist, and other medical professionals to manage your symptoms, facilitate communication, and ensure that all aspects of your care are coordinated. These teams are well-versed in dealing with the symptoms and stress associated with your illness. Their knowledge of the complicated health-care system is also second nature to them.
So as you wrestle with a disease that challenges your ability to control your body and your life, the palliative care team will provide an extra layer of support. They will make sure that whatever can be well-controlled, will be well-controlled.
A common concern of people with amyotrophic lateral sclerosis has to do with the loss of function. Most people with ALS worry about how this loss will make them dependent on others for even the most ordinary tasks, such as bathing, dressing or eating. And because ALS also affects the muscles used for breathing, speaking and swallowing, it can cause physical discomfort and emotional pain.
Your palliative care team can help you with all this and more. The team will be your sounding board and your first line of defense against any symptoms of pain, discomfort, depression or anxiety.
When should you start looking into hospice care for family help?
ALS is a long-term disease with a slow progression that can last months or even years. This complicates deciding when to contact hospice. When a patient has less than six months to live, the general guidelines for hospice care are when the patient has less than six months to live. In the case of ALS, hospice care is most beneficial when the decision to discontinue the use of the feeding tube or ventilator is made.
Signs of need for End of Life Service & Care
The patient’s doctor is the best source of life expectancy information, but there are several signs that the ALS patient’s life is coming to an end. These indicators can assist you in determining when it is appropriate to contact hospice.
- The patient is confined to his or her bed or wheelchair.
- The patient requires round-the-clock assistance with dressing, washing, and eating.
- The patient’s speech has deteriorated to the point where it cannot be understood or heard.
- The patient does not wish to be placed on a ventilator to assist with breathing.
- The patient refuses to be fed through a tube.
While the physician or neurologist who has been overseeing the ALS patient’s medical care may recommend that hospice be contacted at some point, it is frequently up to the patient’s family or caregivers to advocate for themselves. The first step is to contact a hospice provider and request an evaluation. Contact our organization to see if hospice care is the best option for you or a family member at this time.
Hospice Care Advantages
If you or a loved one with ALS is placed in hospice care, a dedicated team forms regular evaluations and provides assistance to the patient. This can be done on a weekly or even daily basis, depending on the patient’s needs. This evaluation examines the patient’s physical, mental, and emotional state and updates the care plan to best alleviate symptoms and suffering. Hospice workers want to ensure the comfort and dignity of the ALS patient.
Patients with ALS can benefit from the services provided
Hospice care provides the following services to ALS patients:
- Hospice will provide care to a patient whether they live at home or in an assisted living facility, nursing home, or other long-term care facility. If an ALS patient is hospitalized due to worsening symptoms, hospice will provide inpatient services 24 hours a day, seven days a week until the patient is discharged.
- Hospice workers are committed to reducing the physical pain that people with ALS may experience, such as joint stiffness, muscle spasms, and the inability to move freely. Through a comprehensive pain management system, they strive to make the patient as comfortable as possible.
- All of the symptoms caused by ALS can have an impact on the patient’s comfort and well-being. Hospice alleviates their symptoms in order to improve the patient’s quality of life. Breathing, eating, drinking, swallowing, and communication difficulties, as well as pressure sores, are among the symptoms.
- Hospice also provides emotional and spiritual support. Long-term ALS patients may experience anxiety, depression, or even dementia, making disease management more difficult. A hospice worker assists the patient in managing emotions and spirituality in order to improve well-being.
- The hospice care worker and the patient’s doctor or neurologist organize and coordinate all aspects of the patient’s care. A team manager oversees all aspects of care and ensures that everyone, including doctors, clergy, and social workers, is on the same page when it comes to the best interests of the ALS patient. Hospice is also in charge of acquiring medical supplies, equipment, and medications required for the patient’s care and comfort.
Is there any benefit to the family of ALS patients?
The ALS patient’s family may struggle to provide care and emotional support to both the patient and each other. They may become overwhelmed by all of the medical and financial decisions that must be made, and their health and well-being may suffer as a result.
Patients Search – Palliative Care Options
Comprehensive training and assistance with caregiving duties help family members understand what needs to be done and how to do it to keep the ALS patient healthy and comfortable. These responsibilities shift over time as the patient develops more symptoms and deteriorates, particularly when communicating becomes difficult. This training also provides reassurance to family members that they are doing everything possible to care for their loved one.
- Access to an on-call nurse 24 hours a day, seven days a week will make family caregivers feel even more secure because they will have someone to call with questions or concerns at any time of day or night. If necessary, a trained hospice worker or nurse can be dispatched to the patient’s home.
- Hospice workers can provide respite and time off for family caregivers to rest and recharge. Caring for an ALS patient on a continuous basis is physically, mentally, and emotionally taxing. Respite care for the patient for up to five days can provide the caregiver with a much-needed break.
- When difficult decisions must be made, hospice is there to gently guide the family. These decisions, such as whether to give antibiotics again for recurring infection, are fraught with emotion. Based on the impact on the patient’s life quality, the hospice worker can assist in determining the best course of action.
- Hospice workers provide emotional and spiritual support to patients and families of all faiths and beliefs.
- Hospice collaborates with social workers who can assist families in determining the financial burden of ongoing ALS care. Hospice care is covered by Medicare, Medicaid, and private insurance, but costs can still add up. Help with financial planning is available for both care and eventual funeral expenses.
After an ALS patient dies, hospice care is available for one year to help the family grieve and cope in a healthy way.
Is there a general benefit to hospice?
Anyone who has experienced a long-term illness that limits one’s abilities and quality of life has most likely heard of hospice. People who have been through similar experiences may have told you about the medical and emotional support that the patient and family receive. However, not everyone is aware of the additional benefits that hospice provides to all parties involved.
Comfort & Care
One of the primary goals of hospice is to allow the patient to remain in their preferred environment, surrounded by the things and people they cherish. Hospice workers provide support to families and assist them in locating the resources they require.
Advocacy Search and Attention
Each case is assigned a specific hospice worker or worker in order to develop a trusting relationship with the family and ALS patient who requires their assistance. The end of a person’s life is a personal experience that necessitates compassion and individual attention. Hospice listens to the patient and his or her family so that the appropriate type of assistance can be provided to ease the process. We advocate on behalf of the patient and family in order to obtain the services and equipment required for the best possible quality of life.
According to research, people who receive hospice care have 20% fewer hospitalizations (1) in their final 30 days of life than those who do not receive such care. As time passes, emergency room visits and hospital stays become more common for many ALS patients and those suffering from other terminal diseases. Instead, hospice care allows the patient to remain more comfortably at home.
Assurance and security
Because hospice provides extensive training and support to caregivers and loved ones who assist ALS patients nearing the end of their lives, these individuals can feel more secure in the knowledge that they are doing everything possible to make the patient’s final days as comfortable as possible. Having access to on-call nurses and support boosts their confidence.
Benefits of Hospice Care
Patients with ALS who are on hospice or palliative care benefit from an increased level of support for themselves and their caregivers, which is one of the most significant advantages of hospice. In order to provide medical and personal care, nurses and aides visit their place of residence. In addition, social workers, chaplains, volunteers, and bereavement specialists assist with the planning and emotional support of the funeral.
When symptoms worsen in an emergency care situation, additional care is often provided instead of another late-night ambulance ride to the emergency room.
Is Hospice Care Insurance Covered?
Yes. Medicare, Medicaid, the Veterans Administration, and the majority of private insurance companies cover hospice care in the area.
For more information in regards to costs for care, please call 773.941.4838 and ask for the ALS Hospice Program at OASIS HOSPICE & PALLIATIVE CARE. Our knowledgeable staff will answer your questions and provide you with the information you require to get connected with care through email as well.