By Sylvana Rinehart, Certified Concierge Care Advisor
Hospice is quite often an initial challenge for many of us. On a recent phone call with a concerned adult granddaughter, she said that the doctor at the hospital mentioned hospice and that no one in the family is ready to accept this terminal diagnosis. In talking things over, without focusing on the end result, she came to understand that hospice or palliative care is more about the well-being for the patient and for all those involved. This article will help one see that there can be benefits from participating in Palliative or Hospice Care to create a safe and loving environment for the patient.
To better understand Hospice, I would like to introduce Palliative care (PC) first because the basic premise is the same – improving the quality of life from every different angle for a person facing specific or unspecified life-threatening illnesses by helping them feel better. It can prevent or treat symptoms and side effects of disease and treatment. Palliative Care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. Improvement in any of those areas are not only beneficial to the patient but also uplifting for the whole family.
Some goals of Palliative care are to:
• Keep pain to a minimum, using clinical methods
• Treat symptoms and improve health where possible
• Assist with mobility and safety
• Allow meaningful interactions between patients and their friends, family, and community
• Improve spiritual and emotional well-being through counselling, art, pet and music therapy programs, and more
• Allow both patients and caregivers to understand and express their feelings at this most difficult of times
• Ensure patients and caregivers understand what is happening and make informed, well-thought-through choices
• Help reduce the often heavy burden on caregivers through training, respite care or everyday hands-on assistance
When does one have to start Palliative care? Palliative care may be provided when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life. With PC, the patient receives medication meant to treat or cure the illness. Any medical doctor can request Palliative care.
Who might benefit from this approach? Some examples; seniors with cancer, kidney failure, chronic heart failure, lung disease or dementia. They can have one or more diagnosis to qualify. Any health care provider can provide PC, but there are clinicians who specialize in Palliative Care.
What makes Palliative care successful? The interdisciplinary approach. One might have a doctor, nurse practitioner, nurse, social worker, chaplain and nutritionist on the team. Care can be provided in the patient’s own home, in a clinical setting or wherever the patient calls home.
Who covers Palliative care? Medicare and most health insurances will cover Palliative Care. Home Health and Medicaid may also pay for Palliative Care if certain criteria are met.
Recap: Palliative care can start anytime and has no time limit. Any treating medical doctor can request PC and the patient can receive treatment. The objective is to improve quality of life while still attempting treatment.
Talking about Hospice is never an easy subject and comes with many different layers of anxiety, expectations and taboos. Assuming you are seeing a diminished quality of life due to the effects of treatment and there is a frequent cycle of re-hospitalization or ER visits, it might be time to revisit your loved one’s advance directives and talk it over with your health care provider. Hospice care can begin much earlier than during a loved one’s last days, and it can improve the quality of life for everyone involved in caring for those with life-limiting conditions.
Consider Hospice when:
• You want your loved one to be home – or in a homelike environment– to receive care
• You want to assert control in the transition to end of life care
• You’re exhausted from the lack of a support network
• You have questions regarding medication and pain management
The primary goal of hospice care is a very simple one: to ensure that every moment counts, in the last six months of life. For terminally ill patients, pain relief is often a central concern. Making sure people in hospice care stay as comfortable as possible is certainly a good starting point, but hospice services can go much further than that.
Hands-on help Sometimes the small things count. A patient’s day at home can be made easier by a volunteer dropping by to help with cleaning and tidying, to have a chat, or just check in and make sure everything is ok. Being able to call a registered nurse and ask a question can help too. Sometimes just knowing that an expert is always there with support and advice can reduce caregiver stress and help patients feel safer and more comfortable.
Caring for caregivers Caregivers often also need support during and after the hospice process. Making sure that those caring for a hospice patient are informed, supported, and listened to is crucial to helping families and loved ones get as much as possible out of the time they have left together.
Is hospice like “giving up”? Although their loved one’s condition may have reached a point that a cure is not likely—or not worth the side effects of treatment—that does not mean there is nothing left to do. In fact, an emphasis on quality of life and easing pain and distress often allows the patient to spend his or her last month’s focusing on the things that are ultimately the most important and meaningful. One client told me that she would rather save her energy and fun time to be with the children and grandchildren than spending time in the bathroom.
Should we wait for the doctor to suggest hospice? You can, but oddly enough, doctors often wait too long or for families to bring it up. This is part of the reason that people often receive hospice care so late in the process. If you think your loved one and family might benefit from the support of weekly home visits from staff who specialize in pain control and the easing of distress, ask your doctor if hospice might be something to consider now, or in the near future.
Who pays for Hospice Care? If the patient has Medicare and meets hospice eligibility requirements, then the government will pay as much as 100% of the cost but does not provide for the room & board. Not only are the services of the hospice staff entirely covered, but medical supplies and prescriptions relating to pain and comfort management are also covered. Some private insurance plans cover and Medicaid plans cover Hospice Care.
Can a patient “graduate” from hospice? Absolutely. I have seen many cases where a patient with Alzheimer’s disease started improving with the additional support, attention and lack of pain, and because they gained weight, were no longer eligible to be on hospice. They were taken off the program and can be put back on as soon as their condition changed.
To sum up hospice, it provides the expert guidance of a interdisciplinary team comprised of a nurse, a case manager, as well as the assistance of home health aides, social workers, and chaplains. Patients and families find they can focus on their relationships, healing old wounds and building wonderful memories together. Far from giving up, hospice helps families support each other during a stressful, yet very natural family life passage.