Modern technology and medicine have allowed for vast improvements in patient care and quality of life. However, neurological conditions and diseases are some of the most devastating for patients and their families to deal with. As neurological diseases progress, families are left to face decisions about what medical support to give.
Even when family members have an advanced directive to follow, there are still many overwhelming choices to be made as quality of life begins to decrease: should there be a feeding tube? What about a ventilator? When patients must face whether the time has come for discontinuing medical support, the effect is felt by the entire family. This is when our organization wants to reach out to you.
Is it the right time to ask about Hospice?
Whether a loved one faces sudden, unexpected loss of quality of life with a stroke or a coma or they are struggling with a condition such as MS where quality of life has declined over months or years, it can be difficult to know when is the right time to ask for hospice care.
Usually, hospice is offered to patients and their family when the patient is thought to have six months or less to live. Hospice can be contacted when patients face a condition which is unlikely to improve with time and treatment. When families struggle to decide about discontinuing medical supports which have been made available to their loved one, hospice can help. While only a physician can give a clinical determination of life expectancy, there are some common signs indicating everyone involved may benefit from seeking hospice care.
Patients Affected by Stroke
Patients who have suffered a stroke may have gone into a comatose or persistent vegetative state. Patients may be conscious but struggling with a continuous decline in their ability to function. These types of patients can benefit from hospice care.
Patients in a Coma
If patients or their families wish to avoid the introduction or discontinue the use of feeding tubes, medical hydration, or breathing machines, hospice can help with support during this difficult time.
Patients with Parkinson’s Disease or Multiple Sclerosis
Patients who are showing difficulty breathing on their own or are having trouble swallowing may benefit greatly from hospice care.
Patients Suffering any Neurological Disease
When patients have general declining quality of life indicators, such as rapidly becoming bed bound, struggling to communicate intelligibly, requiring pureed food, or needing major assistance or having total dependence on others for daily personal care, hospice can offer palliative care.
While a neurologist or personal doctor might recommend when they believe the time is right for calling in hospice care, often patients or their family members must be their own advocate. You, your loved one, or a physician may contact our organization to find out if hospice care is appropriate. Contact us today to see how we can help.
What Services Can Hospice Offer My Loved One?
The hospice team will first evaluate the patient’s status and gather information about patient and family needs. After this, hospice can update patient care and support as conditions changes: even on a day to day basis if needed. Hospice’s goal for you and your loved one is to offer support and help relieve physical and emotional distress as much as possible so patients can retain dignity and be as comfortable as possible at the end of life.
Pain & Symptom Control
Those struggling with end-stage neurological disease often suffer pain from cramps, stiffened joints, or immobility. Hospice will help your bed-bound or wheel chair-bound loved one prevent or treat pressure sores. A hospice pain specialist will ensure patients are in the greatest comfort possible. Hospice can help patients breathe more easily, better manage struggles to eat and drink, communicate wants and needs, and express any feelings of depression or anxiety.
Many people want to spend the final weeks or months of their lives at home in familiar surroundings. Frequent visits from hospice can help ensure your loved one receives the care necessary to make this desire a reality. If being home is not a possibility, hospice can make living in a long-term care facility or a hospital more comfortable.
Hospice will work with everyone involved to ensure there is a specific plan for your loved one’s care in place. Hospice can help facilitate the transfer of information between all involved parties. Hospice will also provide all your loved one’s medical supplies and medications as well as coordinate their delivery and administration to ensure everything needed is available.
Emotional & Spiritual Assistance
Hospice offers any resources your loved one may need emotionally or spiritually to make this time as peaceful as possible.
What Services Can Hospice Offer The Family?
Dealing with a loved one at the end of life can be a very difficult situation. Caregivers often have to make hard decisions regarding healthcare, finances, and more. During this troubling time, families struggle with strong emotions and may feel overwhelmed. Hospice offers many services for a patient’s family as well.
Education & Training
Family and friend involvement in patient care is vital. A patient’s weakening condition causes an increase in symptoms, communication struggles, and a need for more hands-on care. Often, caregivers may feel they simply don’t know enough to meet their loved one’s needs. Hospice relieves concerns by educating caregivers.
Even experienced caregivers struggle with questions or concerns. Our organization is happy to offer support by phone at any time. Caregivers will never need to worry about waiting for an answer until someone has time; our organization is available around the clock. We can even dispatch a member of our team to you whenever you need.
Emotional & Spiritual Assistance
Patients are not the only ones who need emotional assistance during this difficult time. Hospice will meet the needs of loved ones as well.
Hospice services are covered by Medicare, Medicaid, and private insurers, but families may still have monetary concerns due to a loved one’s illness. Hospice can ensure a social worker will help families with making a financial plan and help find financial assistance if needed. After a death, hospice can still find financial resources to help families.
Caregivers with loved ones in end-stage illness may become overwhelmed and exhausted by increasing care needs and high stress. Hospice can provide your loved one with up to five days of inpatient care when the caregiver needs time to rest.
After the passing of your loved one, hospice can offer support to help survivors manage grief in a unique and individual way. Services for surviving family members can last up to a year meaning you will never feel rushed.
An Overview of the Benefits of Hospice Care Can Answer Many Questions
While life’s experiences have often introduced the term hospice, many people are unaware of how varied hospice’s benefits can be.
Hospice works with your entire family in addition to your loved one to help provide the resources each individual circumstance requires to deal with this challenging time and help each family remain as comfortable as possible.
It’s no secret hospitals and long-term care facilities often wish to offer more support than they are staffed to provide. Hospice can help by working with everyone involved in an end-of-life situation to make sure the experience is a personal one with attention to detail and emotion. Hospice strives to make sure each patient and their family is cared for individually through listening, advocating, and making sure a patient’s quality of life is improved.
During the end of a neurological illness, many patients are in and out of the hospital with high frequency. Hospice’s personalized attention, availability, and guidance helps to reduce repeated time in the hospital. One study of terminally ill nursing home residents, published in the American Journal of Medicine, shows that those in hospice were much less likely to be hospitalized during the final 30 days of their lives. 44% of the residents enrolled in hospice were not hospitalized during those last days compared to only 24% not in hospice.
How Can I Facilitate a Discussion About Hospice?
Because the final months of life are a time of strong emotion and difficult decisions, starting the conversation about hospice can be tough.
For Patients Speaking to Their Loved Ones
Remember the importance of education. Approaching loved ones about hospice care for yourself will be easier if you’ve educated yourself first. Often, people are misinformed or misguided about what hospice service really entails.
Make sure you have determined what your loved ones know about your medical outlook before bringing up hospice. If loved ones cannot understand or accept your prognosis, involving your physician, clergy, or a trusted friend to speak with them on your behalf may help.
Once your family and friends know about your desire to have hospice care, it’s importance to discuss your goals for the future. It’s also important to find out what your loved ones are concerned about when making your hospice plan. Make sure your loved ones understand that choosing hospice is not giving up, but, rather, involving hospice is an active choice to make sure everyone’s needs are met.
Often, loved ones may be thinking about hospice but do not want to raise the issue out of regard for your feelings; therefore, is important to take initiative and express your wishes.
For Families Speaking to Patients
Just like for patients speaking with their families about hospice care, it is important to do research and fully understand what hospice care entails, as well as clear up any hospice care misconceptions, before you begin a discussion about involving hospice for your loved one.
Asking For Permission
Before you raise this difficult topic with your loved one, ask permission. Asking permission helps your loved one know you will honor and respect his or her wishes. One talking prompt would be, “I would like to talk about how to make sure you continue to get the best care and attention you can receive as your condition progresses. Is that okay?”
Understanding Your Loved Ones Goals
It’s important to find out what your loved one’s goals are. Find out what the person most hopes for and is most concerned about in the coming weeks or months. Finding out what your loved one wants can be helpful when making goals for a hospice plan.
Suggesting Hospice Support
Now that you are aware of your loved one’s wishes, you can suggest hospice care as a way of making those wishes a reality. Make sure to point out that hospice is not giving up but is a tool to help ensure a person’s goals for the end of life experience can be met. It is important to reassure your loved one that he or she is still in control. Choosing hospice means being able to take full advantage of all options and services available to your loved one.
It is also vital to be a good listener. It is normal to encounter resistance or indecision during a discussion about hospice care. However, if you listen and do your best to understand your loved one’s reasoning on any decision, you can be better prepared to ease any worries during the next hospice discussion.
Contact Harbor Light Hospice for Support
Harbor Light Hospice can significantly improve the overall quality of life for patients struggling with neurological disease and their families. To learn more about our compassionate services, call one of our locations or send us a message online.