If you came across this article, you probably have a loved one who is currently struggling physically and emotionally with ALS or Lou Gehrig’s disease. As this horrible disease progresses and thoughts of ventilators and feeding tubes begin to seep into reality instead of being just a thought someday in the future, you seek out answers, support and some way of finding comfort for both you and the patient. The decision to discontinue medical care touches everyone involved. Our organization’s hospice care can make the process easier.
- When should you first inquire about hospice care?
- What benefits do ALS patients get from hospice care?
- Does the family of an ALS patient benefit as well?
- Does hospice offer general benefits?
- How do I discuss hospice with the people I care about?
When should you first inquire about hospice care?
ALS is a long-suffering disease and decline can be quite slow, taking many months or even years. This makes deciding when to contact hospice more difficult. The general guidelines for hospice care is when the patient has less than six months left to live. In the case of ALS, hospice becomes most helpful when a decision to stop using the feeding tube or ventilator is made.
The patient’s physician is the best source of life expectancy answers, but there are several symptoms that the ALS patient’s life is nearing its end. These signs can help you decide when it is the right time to contact hospice.
- The patient is bound to their bed or wheelchair
- The patient requires total help to dress, wash and eat
- The patient’s speech has deteriorated till it can’t be understood or heard
- The patient does not want to be on a ventilator to help with breathing
- The patient does not want to be fed through a tube
While the physician or neurologist who has been overseeing the ALS patient’s medical care may recommend hospice is contacted at some point, it is often up to the family or caregivers to advocate for the patient themselves. The first step is contacting a hospice provider to be evaluated. Contact our organization to see if hospice care is the right choice at the right time for you or your family member.
Benefits of Hospice Care
If you or your loved one who is suffering from ALS is placed under hospice care, their dedicated team forms regular evaluations and assistance to the patient. This may be done weekly or even daily as often as the patient requires. This evaluation looks at the physical, mental and emotional state of the patient and updates the care plan to best alleviate symptoms and suffering. Hospice workers want to ensure the ALS patient’s comfort and dignity.
Services Provided for ALS Patients
The following services for ALS patients are provided by hospice care:
- Hospice will care for a patient whether they remain at home or reside in an assisted living facility, nursing home or other long-term care center. If the ALS patient is hospitalized due to worsening symptoms, hospice will also provide inpatient services 24 hours a day until the patient is released.
- Hospice workers are dedicated to reducing the physical pain that people with ALS may experience, such as stiffening of joints, spasms in major muscles and inability to move freely. They strive to make the patient as comfortable as possible through a comprehensive pain management system.
- All of the symptoms brought about by ALS can affect the comfort and well-being of the patient. Hospice eases their effects in order to increase the patient’s quality of life. These symptoms include difficulty with breathing, eating and drinking, swallowing and communication as well as pressure sores.
- Hospice offers emotional and spiritual support as well. Long-term ALS patients may experience anxiety and depression or even dementia that makes managing the disease more difficult. A hospice worker helps the patient manage emotions and spirituality to increase well-being.
- Every aspect of the patient’s care is organized and coordinated between hospice care worker and the patient’s doctor or neurologist. A team manager oversees every aspect of the care and make sure everyone, such as the physician, clergy and social workers, is on the same page when it comes to the best interests of the ALS patient. Hospice also handles the procurement of medical supplies, equipment and medications necessary for the patient’s care and comfort.
Does the family of an ALS patient benefit as well?
The ALS patient’s family can have a difficult time providing care and emotional support to both the patients and each other. They may become overwhelmed with all the medical care and financial decisions that need to be made, and there health and well-being may begin to suffer as well.
Services Provided To Patient Family Members
Comprehensive training and assistance with caregiving duties allows family members to understand more fully what needs to be done and how to do it in order to keep the ALS patient healthy and comfortable. These duties change over time as the patient experiences more symptoms and deterioration, especially when communicating becomes difficult. This training also gives the family member peace of mind that they are doing the best they can for their loved one.
- Twenty-four hour phone access to an on-call nurse will make family caregivers feel even more secure because they will have someone to call with questions or concerns any time of the day or night. If necessary, a trained hospice worker or nurse can be sent out to the home as well.
- Hospice workers can give family caregivers a reprieve and some time off in order to rest and recharge. Providing continuous caregiving for an ALS patient is physically, mentally and emotionally taxing. Respite care of up to five days for the patient can give the carer a much needed break.
- When it comes time to make difficult choices, hospice is there to gently guide the family. These decisions, such as whether to provide antibiotics again for an infection that keeps coming back, are fraught with emotion. The hospice worker can help figure out the right course of action based on the impact the patient’s life quality.
- Hospice workers offer both emotional and spiritual support for patients and families of any faith or creed.
- Hospice works with social workers that can help families figure out the financial burden of the ongoing ALS care. Hospice itself is covered by Medicare, Medicaid and private insurance companies, but costs can still mount. Financial planning help is available for both the care and eventual funeral expenses.
- After the ALS patient passes away, hospice care is still available for one year afterward to help the family grieve and cope in a healthy manner.
Does hospice offer general benefits?
Anyone who has ever been affected by long-term illness that limits abilities and the quality of life has probably heard about hospice. Loved ones who have gone through similar journeys may have told you about the medical and emotional support the patient and family receives. However, not everybody is aware of the other benefits that hospice provides for everyone involved.
One of the primary goals of hospice is to allow the patient to stay where they are most comfortable and surrounded by the things and people they care about. Hospice workers support families and help them find the resources they need to accomplish this.
Attention and Advocacy
A particular hospice worker or workers is assigned to each case in order to build a trusting bond with family and ALS patient who requires their assistance. The end of a person’s life is personal and requires understanding and unique care. Hospice listens to the patient and his or her family so they can provide the right type of assistance to ease the process. We speak out for the patient and family in order to get the services and equipment necessary for the best quality of life possible.
Research shows that people with hospice care have 20% fewer hospitalizations (1) in the last 30 days of life than those who do not receive it. For many ALS patients and those with other terminal diseases, emergency room visits and hospital stays become more frequent as time goes on. Hospice care allows the patient to stay more comfortably at home instead.
Security and Assurance
Because hospice provides considerable training and support for caregivers and loved ones who assist ALS patients nearing the end of their lives, these people can feel more secure in the knowledge that they are doing everything possible to make the patient’s final days more comfortable. Having access to on-call nurses and support increases their assurance as well.
How do I discuss hospice with the people I care about?
As any terminal disease progresses, conversations about end-of-life topics can be extremely stressful to undertake. Both the patient and caregivers can find it difficult to broach the subject of hospice care to each other. The following suggestions can help launch the necessary conversation.
Speaking To Family Members
Begin the conversation by asking your loved ones or caregivers what they know about hospice. The people you talk to should understand what having ALS means and what your current health status is. Some people may be unwilling or emotionally unable to accept the fact that you are terminally ill. They may appreciate hearing the news from your doctor, another close friend or family member or your religious leader instead.
Let everyone involved know what your goals are for your life as the ALS progresses. For example, you may be most concerned with staying at home instead of in a hospital or managing pain more than prolonging life. Many patients focus on not becoming a burden to their loved ones. Asking them what they see in the future and what their concerns are is a very important step. Some people may view calling in hospice as giving up on life. Explain instead that it is a choice you are making to ease the time left for everyone involved.
Speak up for yourself and help your family determine what is best for you. Family can often be reticent to bring up end-of-life conversations, but it is a reality that all must face.
Speaking To Patients
The suggestions above for research and education pertained to the family of the patient as well. It is important to understand exactly what hospice is and does and how to approach the topic with the person who is suffering from ALS. Dispelling misconceptions and sharing the benefits of the hospice program can make the conversation easier.
Before bringing up the topic of hospice, ask the patient if you can talk to them about their continuing care, goals for the future and their wishes for the end of their life. Asking permission to have the conversation tells the patient you intend to respect what they say and to have their best emotional and physical well-being at heart. A good opening may be, “I want to ensure you get the best care and support you need now and in the future. Can we please talk about the options?”
First, find out what the patient values most for his or her future. Ask about their goals for their care and what their concerns are. Some options might be to have no pain and stay comfortable, to remain at home for as long as possible or to not be a burden to friends and family members as their disease progresses.
Introducing Hospice As A Consideration
Introduce the idea of hospice care as it pertains to the patient’s goals, concerns and wishes. Counter any misconceptions with concrete information and examples. Some people view hospice as a sign that they are giving up on life, but the focus is really the opposite. Explain that hospice is patient directed and exists to help their goals and wishes be met. Hospice is dedicated to making life as comfortable as possible for all the time the ALS patient has left.
Listen with an open mind and an open heart everything that the ALS patient has to say. Resistance is normal when you first bring up end-of-life decisions and hospice care. Understand the fears and concerns they may have and prepare to address them in future conversations about hospice. Never argue or debate, but instead listen and respond with the best information and caring attitude possible.
Support During Difficult Times
One of the difficult things to come to terms with as a terminal patient is the loss of control over their body and the direction of their life. When you have a conversation about hospice with your loved one, assure him that he is in control of the decisions. Hospice will not come in with their own agenda about how to handle the end of life situation. Instead, they provide options. With hospice, patients can stay in their own home for longer, can have more active interaction with their physicians and can choose their own emotional and spiritual support systems. Above all else, give your loved one the reassurance that he has the right to make choices for his own life and that you will honor all his/her wishes.
Contact Harbor Light Hospice for Support
Harbor Light Hospice can greatly enhance the overall quality of life for ALS patients and their families. To learn more about our compassionate services, call one of our locations or send us a message online today.