We prefer to talk about wellness, independence, and aging in place. We don’t want to talk about death or dying lest that open the door to allow it in and hasten the process. Should anyone even suggest hospice, “Not yet,” is often the immediate reply—before shutting the conversation down completely.
As a result, even though an initial hospice diagnosis entitles a patient to six months of compassionate care (which can be renewed for an unlimited number of 60-day periods), people often wait far too long before beginning hospice care. This, when it’s completely paid for by Medicare or private insurance.
In fact, in the United States, the average length of hospice care is less than 60 days in total. And 30 percent of those who elect hospice care die in seven days or less. The median length of time on hospice is 18 days.
What is missed by closing the door to hospice?
The goal of hospice is simply to ensure that you enjoy the absolute best quality of life for whatever time you have left. And by prolonging admission into hospice throughout an incurable and possibly painful illness until the very end, your ability to make the most of each day will be forever lost.
In effect, the services hospice provides aren’t about dying. They’re about living life to its fullest potential and making the most of each day. When you select a hospice, you have the ability to:
Use your own doctor
The hospice team that will assist you generally consists of a physician and nurse (both on call 24 hours a day); a social worker, counselor or chaplain; and a volunteer. Many hospices offer added services: psychologists, psychiatrists, home health aides, art or pet therapists, nutritionists, and occupational, speech, massage or physical therapists.
However, that doesn’t mean that you can’t use the services of your own doctor. You have the choice to continue to see your regular doctor instead of the hospice doctor for whatever medical need you might have. And you continue to remain in charge of your medical decisions for as long as you are able.
Continue to hope for a cure
Traditionally, hospice care is used when a patient can no longer be helped by a curative treatment and is expected to live 6 months or less. During that time, hospice provides supportive or palliative care, which is a treatment to help reduce pain and relieve symptoms.
However, Medicare also recently announced the expansion of a five-year pilot program to 141 hospices in 40 states to allow patients to continue pursuing curative treatments while under hospice care.
Through the Medicare Care Choices Model, the Centers for Medicare & Medicaid Services (CMS) will provide a new option for Medicare beneficiaries to receive hospice-like support services from certain hospice providers while also receiving services provided by their curative care providers.
Although it is not available in every state currently, there are still 98 hospices participating in the Medicare Care Choices Model. This program will expand to some 140 Medicare-certified hospices over the next 3 to 5 years.
As a result, this will enable as many as 150,000 eligible Medicare beneficiaries with advanced cancers, chronic obstructive pulmonary disease, congestive heart failure, and human immunodeficiency virus/ acquired immunodeficiency syndrome that receive services from participating hospices to experience this new option and flexibility.
Enjoy a longer, more fulfilling life.
Sounds counter-intuitive, doesn’t it? You would normally associate a hospice with dying. In reality, however, research shows that hospice recipients live longer, on average than those receiving standard care.
In fact, a 2010 study of lung cancer patients found they lived nearly three months longer.
Another study, looking at the most common terminal diagnoses, discovered the same results. Those with gallbladder cancer live an additional 20 more days while those with breast cancer lived an additional 69 days.
Manage your pain and symptoms
Remember, the goal of hospice is to help make you as comfortable as possible while still allowing you to stay in control of and enjoy your life.
This means that discomfort, pain, nausea, and other side effects are managed to make sure that you feel as good as possible, yet are alert enough to make important decisions and enjoy the people around you.
Should drugs like morphine ever be used, they will only be used to treat anxiety and lessen pain, which has been shown to be undertreated at the end of life—not hasten your death.
Receive continuing care for chronic conditions
Going onto hospice doesn’t mean that any chronic condition you may have will be ignored and left untreated. Maintenance-care is provided for any existing chronic conditions, such as diabetes or emphysema—as well as any disease-specific treatments to help control the pain or symptoms of a life-limiting illness.
Receive needed medical supplies and equipment
In addition to the services and medication provided by the care team, Medicare ensures that hospice pays for:
- Durable medical equipment (such as wheelchairs or walkers)
- Medical supplies (such as bandages and catheters)
- Nutritional/dietary counseling
- Hospice aide and homemaker services
- Physical and occupational therapy
Enjoy complete care coordination
Your hospice team will coordinate and supervise your care 7 days a week, 24 hours a day. If you’re having a problem, at any time, you and your family are encouraged to contact your hospice team. As difficult as your journey may be, hospice care assures you that you’re never alone and can get help at any time.
Receive care where you want or need it.
Hospice is offered by both for-profit and not-for-profit organizations and can take place:
- At the home of the patient, a family member, or friend
- At a stand-alone hospice center
- In a skilled nursing facility or other assisted care residence
- In a hospital
While over 80% of hospice care takes place in the home, your hospice team can also arrange for inpatient care, as well, should that be wanted or needed. Should you wish, you can go return to in-home care when you and your family are ready for that to occur.
Allow your loved ones to enjoy respite care
Being a caregiver is exhausting—no matter how much a loved one may say otherwise. If you’re being cared for by a family member or friend at home, however, hospice services allow you the ability to stay for up to 5-days at a time in an inpatient respite care facility.
During this time, your family can, go on a mini-vacation for a long weekend, go to special events or simply get much-needed rest at home while you’re being cared for by the same hospice team that has been helping you in your own home.
Gain support for emotional, social, psychological and spiritual needs
It’s no secret that everyone differs in their spiritual needs and religious beliefs. That’s why personalized spiritual care from clergy and social workers is put in place to meet your specific needs. That might include helping you say good-bye, reflecting on what death means to you, or assisting you in completing your spiritual journey.
Ensure that your entire family knows what’s happening
Tired of never knowing what’s going on with your medical condition or confused as to what new symptoms mean? Through hospice, you’ll benefit from regularly scheduled meetings with you and your family, often led by the hospice nurse or social worker. Daily updates may also be given informally by the nurse or nursing assistant who can help you and your loved ones interpret what’s happening as your condition progresses.
Have the ability to quit hospice at any time
You can stop hospice treatment at any time you wish and return to a curative-based approach if you feel that will benefit you more. Your hospice team may even initiate the discharge if they see viable signs of recovery. Then, if you wish, you can go back on hospice again later.
Unfortunately, almost a third of those with a terminal illness die in the hospital where they are hooked up to machines that, at best, can delay the process of dying. Hospice, on the other hand, is designed to support the more personal aspects of your life.
It can help you reflect on your life and legacy, focus on relationships in a deeper and more intentional way, achieve a sense of closure, and realize any end-of-life goals, such as getting financial affairs in order, mending a broken relationship, distributing personal possessions or attending a grandchild’s wedding.
All misconceptions aside, hospice isn’t all about dying. It’s about living your life to it’s fullest on your last day with your very last breath.
Know that hospice continues after your death
Finally, once you’re gone, know that the hospice care team will continue to work with your loved ones to help them through the grieving process.
Trained volunteers, clergy, and/or professional counselors provide support to survivors through visits, phone calls, referrals, and support groups. These services are provided at no charge for a year after your death.
Although you will be gone and missed, they will know you did everything possible to ensure a life well lived and that you did everything you could to make it as easy as possible for them to say goodbye.
You may balk at the mention of hospice. By understanding what hospice offers, however, you’ll learn that it’s not about dying. It’s about embracing life. And making the most of every day you have left as you journey along towards the end of the gray mile.