The decision to stop medicines and treatments that are aimed at a cure is a difficult one and is beyond the scope of this article. But once you have made that decision (and you can always change your mind, by the way), the comprehensive, 24/7 care and support you and your family will receive will amaze you.
And your hospice team will be alongside for the journey to and beyond the end of life. This article will demystify what it means to be on hospice at home, what kind of care to expect, ways that symptoms are managed, and a general overview of what the dying may look like.
Getting started on hospice
Once you or your loved one has opted to for hospice care (most often delivered at home but not always), and your doctor has agreed this is appropriate, a member of the hospice team will call to schedule a visit to your home to “admit” you to hospice. The admission visit is done by a nurse and sometimes a social worker as well. Depending on the hospice agency, the nurse who does your admission visit will often not be your primary nurse.
Key elements of this visit include:
- Explaining the hospice philosophy, and once all questions have been answered, signing consent for admission to hospice. It is very important to have key family members, ideally including your health care proxy, present at this meeting. If the person being admitted to hospice is not able to make his/her own medical decisions, then the health care proxy must be present to sign the consent form.
- Reviewing your medical history and current illness to determine what, if any, DME (durable medical equipment) you may need. Examples of DME are a hospital bed, wheel chair, shower chair, oxygen. All of this equipment is brought to you and is covered under the hospice benefit of your insurance. If you already have some of this equipment, it sometimes needs to be switched out because different home care agencies/hospices use different vendors.
- Reviewing your current medications, determining what medications will be covered by hospice and thus delivered to your home. Only medications related to your hospice diagnosis are covered by hospice. For example, if you are coming on to hospice for metastatic breast cancer, but you also have insulin-dependent diabetes, your insulin will not be paid for by your hospice benefit. Almost always, a comfort kit or e-kit will be prescribed. This is a bag or box of medications that is delivered to most hospice patients upon admission. You will be asked to keep it in a specific place (often in the fridge) so that it can be reliably located in a crisis. This kit includes medications commonly use in hospice that you can take if symptoms develop that are not controlled with your standard medications. The doses of each medication will be clearly explained verbally and in writing. The first doses may even be measured out for you.
- Introducing the different members of the hospice team who you can expect visits and/or calls from over the upcoming days. Your hospice team will include physicians, nurses, social workers, chaplains, home health aides, volunteers, and bereavement counselors. The following experts may also be part of a hospice team: nurse practitioner/physician assistant, music therapist, art therapist, massage therapist, pet therapist, or a child life specialist. The only member of the team who must visit at least every 14 days is your nurse (this is a Medicare requirement); your nurse will most likely come more frequently than that. At this admission visit, you may already know what other team members you hope to see (for example, a home health aide or massage therapist), but you can also ask to start or stop other visits at any time. What services you desire will likely vary as your disease progresses.
- Informing you and your loved ones that it is the family, private caregivers, and your community who actually deliver the care to the person on home hospice. While the hospice team will be in and out of the home frequently, and will do extended teaching, as a person declines and becomes less independent, it is the family, caregivers, etc who are responsible for the care and safety of the patient.
Getting into a rhythm
The first days of hospice can be overwhelming with deliveries, meeting new people, retaining new information, and simply the stress of the situation, but then you realize why you decided on hospice in the first place. Together with your hospice team, you will create a schedule of visits that meets your needs. Nursing visits may be once a week but could be 2-3 times a week if needed. There is no rule and the frequency of nursing visits change as your needs change.
A plan of care will be developed, implemented, periodically reassessed, and re-implemented. A plan of care will include basics like how often your nurse visits. It also may include strategies to increase your quality of life, tweak your medications, or to address stresses being experienced by your loved ones. It is during this phase of hospice care that we focus on living, not dying. Ideally, you have decided on hospice while you can still enjoy your family and friends and can still go out for meals. You may even still be working or caring for yourself and family. Your plan of care will integrate all of this and whatever is most important to you and your family.
When there is a crisis
It is rare to get through living with a terminal illness and the journey to end of life without a pain crisis, infection, or circumstance that challenges the current plan of care. The hope is that by having a hospice nurse available 24/7, you will get fast and effective help while keeping you at home. If you experience a fall, develop a new symptom, or observe worsening of an existing problem, call hospice.
The nurse who answers the phone may direct you to the comfort kit for a strong pain medication or a medication to stop vomiting or a seizure. If you have a fever, your hospice team will decide with you and your doctor how to diagnosis and treat it.
If want to go to the hospital, still call hospice first. It is very important that the hospice knows when you’ve had a change in status. They will not prevent you from going to the hospital. At the least, hospice will be a source of support, and may even prevent the need to go to the hospital.
Urgent nursing visits are done around the clock. New medications can be delivered emergently off hours. Many hospices can administer medications and deliver interventions that are typically thought of as only available in an emergency department or hospital. The hospice may even be a resource during a crisis such a loss of power, a caregiver shortage, or challenging family dynamics.
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When you/your loved one gets sicker
As you get weaker, require more assistance and have more symptoms to manage, hospice will adjust the plan to ensure you and your family has the supplies, medications, DME, and emotional support you need. Examples include: your nurse may increase her/his visits, the hospice physician or NP may visit to help troubleshoot hard to control symptoms, your social worker can make an appointment with family members who may be having increased struggles.
How to know that death is close
The hospice team members are experts at managing all elements of the dying process. The hope is that you’ve gotten to know your team by this point and they do not feel like strangers. When you or your loved one is close to end of life, there are predictable symptoms and bodily changes that will occur. It is helpful to know what to expect and to understand what you are seeing. Having this information not only minimizes the fear of what is happening but also enables you to recognize signs of suffering.
Generally speaking, a person who is dying will have diminishing awareness of what is going on around them (always assume, however, that the dying person can hear), may exhibit non-verbal signs of pain/discomfort, will have changes in the rate and pace of breathing, and will be unable to eat and drink. There are other signs and changes that happen that you should ask your hospice nurse about.
During the phase of actively dying, medication doses, frequency, and route of administration will be constantly monitored and adjusted as needed. When you are on home hospice, it is the responsibility of the family/caregivers of the patient to provide the around the clock physical care and administration of medications. Support and advice from the hospice team is available 24/7 and staff will come out for support as appropriate but the brunt of the care remains with the family.
Many families view this as a privileged and sacred time but it is hard work and it is not for everyone. There are other levels of hospice that can be considered if needed.
After the final breath
Once death has occurred at home, call hospice. More than likely, burial, cremation, and/or funeral planning has been completed. The hospice will contact the funeral home. You may keep your loved one at home until you are ready for the body to be taken away. If you have made special arrangements for research on your body or for a green burial, inform your hospice team as soon as these wishes/plans are known.
Your hospice social worker and/or bereavement counselor will be available. Grief and bereavement support will be provided by hospice for at least a year after the death. Different hospices offer different levels of bereavement support but they can always be a resource for additional or different services.
It is my hope that this article helped explain some of the logistics and details of what home hospice looks like. Dying is part of living and hospice is focused on living while dying. Hospice supports you and/or your loved one to ensure comfort and peace.
Expressing your wishes for end-of-life care
While it's critical to think about what kind of care you want to receive when time is short, it's equally important to express those wishes to your family and care team to make sure they are honored. There's no better time to consider these decisions than when you are still healthy or in the earlier stages of illness when your mind is clearer. One helpful way to do this is to use Cake to explore all your healthcare, legal, funeral, and legacy decisions.
Cake is a free website (you're on the Cake blog right now) that helps people get their affairs in order and share access to their plans with their loved ones. This makes tough decisions a bit easier on everyone. It can also be an enormous weight off your shoulders to have a detailed plan ready for when the time comes. As life is unpredictable, all adults (healthy or ill, young or old) should do proactive end-of-life planning.