In honor of Independence Day, my favorite holiday, I suggest it’s the perfect time to throw off our old, outdated, narrow, confining, and restrictive concept of end-of-life care as only including hospice medical care.
I can hear you now! What is this left-wing liberal, latte drinking, Volvo-driving lawyer talking about? First of all, I do not drink lattes. Second, I admit the rest of the description is quite accurate.
Vermonters have always been revolutionaries and we are proud of it. I was taught that as a citizen of this country it is my duty to assess how we do things, identify what we can do better, and then work to create change to improve our communities. I know we can do better as a society in supporting people who are dying and those caring for them by providing easy, fast access to a holistic array of services. End-of-life care is not and cannot continue to be defined as medical care in the last few days of life.
Let’s start with the law because that’s where this limited concept of hospice is based. Hospice is defined under Medicare law, or Title XVIII of the Social Security Act of 1965, as Amended, as the delivery of medical support, primarily pain management, drugs, and durable medical equipment, in the home, hospital or nursing home setting for a patient who is terminally ill (defined as 6 months or less to live). Counseling services and respite care services are also covered services to be provided to the dying patient and family under Medicare hospice.
Medicare hospice services are only delivered by home health organizations certified by the Medicare program as eligible providers of hospice care, or by hospitals or nursing homes also certified by Medicare. The providers deliver what Medicare or other insurers will pay for – basically medical care, pain management drugs, equipment, counseling and respite care. Those who provide this service do a great job for thousands of people in our country every day and we should thank them for their service every day.
We, the people, however, have put our collective concept of end-of-life care into this strait-jacket definition of hospice as being medical care only.
I suggest that we, the people, need to break out of that old conceptual definition if we are serious about making death an honored, supported experience in our culture.
I am not saying we need to change the law, let me be very clear on that. The laws governing the Medicare hospice program are just fine as they are written.
I am suggesting that is it time we change and broaden our collective perspective about the actual needs of dying patients and their families/caregivers and start meeting all of those needs.
Let’s look at the facts and stats. In 2011, 85% of the people getting hospice care were enrolled in the program for less than 14 days, and 35% of those received services for less than 7 days. The law says you get 6 months of hospice care, and you can stay in longer in the program if you continue to meet the criteria. So, why are most of the patients using the Medicare hospice program only receiving services for 14 days or less?
Is hospice not serving patients for longer periods of time because we, the consumers or medical providers, work off a narrowly defined concept of end-of-life care? Is this an offshoot of denial of death until the bitter end?
Or is hospice medical care simply the last service we ask for in this life? Are we taking it upon ourselves to hunt and gather the rest of the services we need leading up to death, without any formal network of support, using up the last few good weeks in the life of the dying person in the process?
I think it’s a combination of all of the above – denial about death, not seeking hospice care earlier, and putting other needs for services ahead of the formal request for hospice medical support.
If I could redefine our culture’s view of “end-of-life care” it would look something like this, and probably in this order of priority.
- Palliative care: to assure that the person who is dying is as pain-free physically as possible while maintaining mental clarity and is as independent as possible for as long as possible. Providing support in the home to assist the person with daily needs, either through hospice, Meals-on-Wheels, community volunteers, or from family members is the number one priority.
- Access to counseling (emotional and/or spiritual): to help the person who is dying establish clear goals for what they want/need to accomplish before they die. To help careivers/family members establish clear goals for behavior by everyone, responsibilities for each person in the care team, and for how information will be shared. For example, a spouse may want to make sure that their surviving spouse is cared for after their death. Maybe public benefits need to be maintained for that surviving spouse, or maybe a child with disability needs to be cared for somewhere other than the home after the death. Who will take that task on, how will they interact with the surviving spouse or child, what support do they need to take on that task? Just getting clarity on what time is left and what the important goals are for all involved is important.
- Financial planning: to assist the person who is dying or their spouse/partner, or children, on how to manage the assets and/or debts of the person before and after their death. How will the surviving spouse manage financially on less income? Can they still support the home they live in, or do they need to sell a house, downsize, or move geographically to be closer to children? By helping a dying person and their loved ones come up with a financial plan we can reduce the fear and tension at the time of death about the future of their dependents. This piece of planning is often overlooked. This is especially important if the surviving spouse is on public benefits, like Medicaid long-term care, where someone needs to come up to speed on how that program works and how to maintain eligibility.
- Conversations: if necessary, using facilitators/mediators/counselors to help the person who is dying, their spouse/partner and loved ones to have productive conversations about their death and plans for caring for a loved one (spouse/partner or child) who has been dependent on them financially or emotionally. Or using professionals to help the dying person say goodbye. Sometimes these conversations get loaded with emotions, like fear for the future or anger about past hurt. We could provide assistance, even crisis interventions on an as-needed basis, during the death process and after death, using professionals to facilitate basic conversations as may be necessary.
- Healing arts: to provide massage, Reiki, music therapy, art therapy, and other healing arts services to the dying and their caregivers. Sound strange? It shouldn’t. Touch is important to the dying and can help relieve physical pain and reduce stress. If someone is bedbound, then getting massage can help relax them and help the joints feel less painful. Dying is stressful for everyone who is involved, and any form of touch therapy can help to reduce that stress. Hospice programs often have volunteers who are massage therapists or Reiki practitioners so this service may be offered for free to the patient through hospice. Music and art can express what words cannot. Just read Dr. Spurgeon’s comment to see how important it was for a dying father to hear his daughter playing the piano for him in his last days.
- Memorial or Funeral Planning: help the dying person set out their wishes for a memorial service or funeral with as much detail as possible. Families and loved ones can and will explode over the issue of a memorial service, funeral service or burial. I always advise my clients that if their goal is to leave behind a functional family or circle of loved ones after their death, then it is essential that they plan a funeral or memorial services with as much detail as possible and set aside money for that cost, or prepay that cost.
- Estate planning: get to a lawyer and set up an estate plan to avoid having to go to probate court to retitle assets and settle debts. A lawyer can also assist with Medicaid asset planning for a surviving spouse on public benefits, or a child with disabilities who is dependent on public benefits. Please keep in mind that lawyers, like palliative care physicians, are limited in what they can do in a given situation if they are called in during the last few remaining days of life.
As you can see from the few examples above, people who are dying and those who love them need far more than hospice medical care in the last few months of life. In rural areas of our country, these additional services can be hard to find or access – so early planning becomes critical.
This list is by no means exhaustive of services needed at the time of death or afterward. In creating this list, I am suggesting that we begin to broaden our perspective on end-of-life supportive care. By doing so, we might just get to a new model of how to deliver an effective array of support services to reduce the pain, stress and emotional trauma of those who are dying and the people who love them.
I would love to hear your thoughts on other services you have experienced that would help people who are dying and those who care for them – remember, conversation can create change!